I am so upset , im just sitting here crying

pattynonews
pattynonews Member Posts: 176
edited March 2014 in Caregivers #1
I DO MY BEST TO TAKE CARE OF JACK, AND I ONLY CAME TO THIS SITE TO GET SOME SUPPORT AND MAYBE SOMEONE WHO UNDERSTANDS WHAT I AM DEALING WIHT BUT AFTER GETTING A RESPOND POST FROM THIS GUY ( SOCCERFREAK / JOE ) HE PRETTY MUCH SAID I DID NOT KNOW WHAT THE HELL I WAS DOING , BETWEEN THE FEEDING AND JACK'S PAIN MEDICATION, WHO WANTS TO COME TO THIS SITE, KNOW THAT YOU ARE GOING TO GET A RESPONDS LIKE THAT, IM HAPPY THIS GUYS KNOW EVERYTHING ABOUT CANCER, BUT HE IS NOT HERE LIVING MY LIVE , HIS DIETICIAN IS INSTRUCTING US ON TO FEED JACK ALL THOSE CALORIES BECASUE HIS METOABISM IS VERY HIGH, AND HE HAS LOST 20 POUNDS AND WHY DO I HAVE TO JUSIFY MYSELF TO THIS GUY, IT IS A FIGHT EVERYDAY FOR JACK WITH THE PAIN, TODAY HE HAS NOT EVEN GOTTEN OUT OF BED, HE FEELS SO BAD, BUT THIS GUY JOE KNOWS EVERYTHING ABOUT CANCER, WELL YOU DON'T KNOW ABOUT JACK, AND YOU NEED TO CONSIDER WHAT A CARETAKER HAS TO GO THROUGH BEFORE YOU JUSGE AND WRITE STUFF ABOUT SOMEONE, AND I TOTALLY BELIEVE IN KARAM AND YOUR BEHAVIOR WILL CATCH UP TO YOU . AND WHERE DID YOUR GET YOUR ONOCLOGY LICENSE AND NURITIONIST LICENSE, AND PAIN MANGEMENT , IF YOU HAVE NO SUPPORT YOU SHOULD KEEP YOUR COMPLIMENTS TO YOUR SELF, HOW DARE YOU UPSET ME AND MAKE ME CRY BECASUE WHAT YOU HAVE CANCER SO THAT GIVE YOU THE RIGHT, NO CARETAKERS HAVE FEELING TOO AND IF IT WAS NOT FOR US CARETAKER WHERE WOULD YOU CANCER PATIENTS BE, CARETAKER GIVE UP THERE LIVES FOR YOU, IT IS LIKE WE HAVE CANCER TOO, DO YOU KNOW PERSONALLY I HAVE GIVEN UP MY JOB I HAVE NO HEALTH INSURANCE MY KIDS GO WITHOUT TO MAKE SURE JACK HAS EVERYTHING HE NEEDS, I CAN'T EVEN GO TO THE DOCTORS FOR MY ANXIETY I HAVE CHEST PAINS BUT I ALWAYS PUT JACK FIRST BECAUSE I LOVE HIM AN I AM DOING THE BEST, SO SHAME ON YOU, FOR JUDGING A CARETAKER, JUST REMEMEBER YOU HURT A CARETAKER WHO IS FIGHTING EVERYDAY TO KEEP HER MAN ALIVE I HOPE YOU ARE PROUD OF YOUR SELF

ATTACH IS WHAT HE SENT ME





, Misery
I may be wrong about this, but if you are loading someone up with more than 5,000 calories of protein a day as it sounds like you are doing, you are apt to be in the process of causing serious problems for his kidneys.

Typical daily caloric intake (with a number of variables, to be sure) is between 1,500 and 2,500 calories. A professional athlete, a serious amateur athlete, will exceed that and get up into the 5,000 - 7,000 range, perhaps, but even then, it is not entirely protein, which would likely nuke his/her kidneys, and those folks are MONITORED DAILY BY A PROFESSIONAL NUTRITIONIST AND ARE NOT SEDENTARY.

I can no longer recall the type of tube your 'man' has, if indeed you ever specified. If it is like mine, however, the likelihood of getting honey down it is slim to none and ice
cream had better be melted down to milk and sugar (personally, I would never consider it, but then, he may have a different tube).

My feeling, based on a comparison of your posts here and especially between here and elsewhere in the boards, where the facts change at least marginally, is that things are not adding up.

I am hopeful that you are simply miscommunicating with 'Jack's' doctors with respect to the calories and other issues, and that you are mis-typing from one board to another. If so, it is time to start taking pen and paper with you to every meeting with doctors. List your questions, record the answers you receive, come up with new questions based on those answers. (It is also time to make sure your posts compare favorably from one board to another.)

The idea that you would be trying to negotiate someone's pain medications (a previous post) while apparently incorrectly recalling these other very important details is straight out of a Stephen King novel, if such is the case.

Joe

Comments

  • trish07
    trish07 Member Posts: 138
    No Need to Justify.....
    Patty, I unfortunately read his post last night when I was checking to see if you had any updates on your situation. I could not even contemplate that he posted such a cruel response. I was so tempted to respond back to him,but sometimes I think that is just what he is looking for. I was hoping that you would not read it as I knew how upsetting it would be when you are dealing with so much right now.
    You do not have to justify yourself to him. What he says does not matter, is of no importance [ except maybe to him ]. Do not allow the postings of apparently someone who was bored and thought they would see if they could shake things up, keep you away from the one place that you can count on for advice and comfort and caring from others in similar circumstances.
    This is not the first time that he has attacked a caregiver. It was awhile before she started posting again and we still don't hear from her much. You have many friends here and we will continue to be here for you. Please don't stop coming to us when you are in need. I know that when I have needed someone, you were there posting and it meant alot.

    Your Friend Trish
  • SonSon
    SonSon Member Posts: 174
    Callous and Thoughtless
    Pattynonews...

    He was callous and thoughtless in his comment. He does offer some good insight from time to time - but I don't have any idea why he came off that way.

    Also, remember every one coming to these boards are dealing with their own issues. Sometimes they read something that hits a nerve and they spout off.

    You are not the only one to be a target of thoughtless statements. Everybody has a different perspective and statements can be misunderstood (though his seemed quite clear - and rude, and inexcusable).

    Take the good and leave all the rest.

    We all know that you are doing your best and we support you for your great effort.

    Fatima
  • newbride
    newbride Member Posts: 142
    I know I am now in the minority here, but without reading what the post Joe actually responded to and from just reading his response I honestly do not see it as trying to be mean. Granted the wording could definately have been different, but I don't think he "meant" to come off as saying you were wrong.

    The text that was identified as his being posted starts off immediately by saying "I may be wrong" and in fact he might be and he is putting that right up front that he is not claiming to "know it all".

    Also, his comments about the feeding tube is pretty much point on depending on the type of tube Jack has. My husband has a PEG tube and both the nutritionist and his doctor warned us not to put anything in the tube other than Jevity or Ensure. They said anything else can clog the tube and cause extreme complications. I asked about smoothies since they were high in calories and they said no nothing but Ensure or Jevity and they perfer Jevity over Ensure. If Jack has a PEG tube I cannot fathom how you would be able to flush honey clear from the tube (of course I don't know if you actually mentioned honey I only saw Joe's response above).

    As for telling you to bring a pen and paper and write everything down, I do this all the time, as a caregiver and working full time as well I have tons of stuff on my mind and sometimes it is really hard for me to remember it all. I keep everything dated and noted in a steno pad so everything is in one place and I date the notes and put exactly who I spoke to. I also jot questions that I think of during the day that I don't want to forget to ask the doctors.

    I know how incredibly hard this is for you - and I know it's difficult seeing Jack losing weight, etc. The uncertainity of the situation can be too overbearing at times. Right now we have no idea what my husband's outcome will be, having a rare cancer where he is the first person in the US to be diagnosed and the third in the world without any type of historical documentation is really hard as we don't even know if the treatments he is getting are even the right ones for this situation - everything is pretty much an experiment. And with time being of the essence it is really hard since his cancer is so aggressive we just have to hope and pray for the best.

    You and Jack are always in my thoughts as well and while I don't always respond to the posts I do check in to see how you are doing.

    Hang in there.......you're doing a great job!!!
  • pattynonews
    pattynonews Member Posts: 176
    newbride said:

    I know I am now in the minority here, but without reading what the post Joe actually responded to and from just reading his response I honestly do not see it as trying to be mean. Granted the wording could definately have been different, but I don't think he "meant" to come off as saying you were wrong.

    The text that was identified as his being posted starts off immediately by saying "I may be wrong" and in fact he might be and he is putting that right up front that he is not claiming to "know it all".

    Also, his comments about the feeding tube is pretty much point on depending on the type of tube Jack has. My husband has a PEG tube and both the nutritionist and his doctor warned us not to put anything in the tube other than Jevity or Ensure. They said anything else can clog the tube and cause extreme complications. I asked about smoothies since they were high in calories and they said no nothing but Ensure or Jevity and they perfer Jevity over Ensure. If Jack has a PEG tube I cannot fathom how you would be able to flush honey clear from the tube (of course I don't know if you actually mentioned honey I only saw Joe's response above).

    As for telling you to bring a pen and paper and write everything down, I do this all the time, as a caregiver and working full time as well I have tons of stuff on my mind and sometimes it is really hard for me to remember it all. I keep everything dated and noted in a steno pad so everything is in one place and I date the notes and put exactly who I spoke to. I also jot questions that I think of during the day that I don't want to forget to ask the doctors.

    I know how incredibly hard this is for you - and I know it's difficult seeing Jack losing weight, etc. The uncertainity of the situation can be too overbearing at times. Right now we have no idea what my husband's outcome will be, having a rare cancer where he is the first person in the US to be diagnosed and the third in the world without any type of historical documentation is really hard as we don't even know if the treatments he is getting are even the right ones for this situation - everything is pretty much an experiment. And with time being of the essence it is really hard since his cancer is so aggressive we just have to hope and pray for the best.

    You and Jack are always in my thoughts as well and while I don't always respond to the posts I do check in to see how you are doing.

    Hang in there.......you're doing a great job!!!

    Not walking away
    I was going to walk away from this site because of some guy , but you know I have been fighting cancer with Jack for the last year, and I will be dam if I let some guy bring me down, you can not take my fighting spirit, Cancer might make me cry and upset me but oh hell no this Joe will not do this to me, Karma will take care of you , when you bad talk a caretaker it will come back to bite you in the butt!!


    Before everyone response they should read all the facts, Yes jack has a feeding tube he is not on jevity, because it has too much fiber and all he did was loose weight, Hei is on isosource which is a medical nutrient drink that has 375 calories per can the nutrient advised us to add honey or his protein powder and we put it in a blender and thin it out, So no one is putting straight honey in his tube, it just give Jack some extra carbs that your body needs and we buy him super organic vegtables, your body needs all that , and the nutrient cans don't give him that, and the first year jack had his feeding tube, he did not loose one pound, never got it clog never got it infected, he did not loose the weight until some stupid nurse in the hospital said oh he should be on jevity it is so much better, well with a month on that he lost 15 pounds, he was doing great, before everyone got in to being the King Nutrientist, I only listen to his license dietician, Now , we had to learn the hard way, and now it is a stuggle to get him to gain the weight back, Think about it jevity is very high in fiber what do people do when they are on a diet they take more fiber to fill them up so they eat less, And I don;t need to be told what to do when I go to a doctors appointment especially in a mean way, I have worked in doctors offices for 15 years, especially with elderly , So Im very capable of asking what I need to know, it is just so upsetting that this guy is just rude to caretakers, This guy Joe should try be a care taker for someone 24/7 and then tell us caretakers we don;t knowwhat we are doing, but Trust me Karma will find him and he should just hope he will have a caretaker who is to doing there best to take care of him, but with Karma you always loose in the end,
  • newbride
    newbride Member Posts: 142

    Not walking away
    I was going to walk away from this site because of some guy , but you know I have been fighting cancer with Jack for the last year, and I will be dam if I let some guy bring me down, you can not take my fighting spirit, Cancer might make me cry and upset me but oh hell no this Joe will not do this to me, Karma will take care of you , when you bad talk a caretaker it will come back to bite you in the butt!!


    Before everyone response they should read all the facts, Yes jack has a feeding tube he is not on jevity, because it has too much fiber and all he did was loose weight, Hei is on isosource which is a medical nutrient drink that has 375 calories per can the nutrient advised us to add honey or his protein powder and we put it in a blender and thin it out, So no one is putting straight honey in his tube, it just give Jack some extra carbs that your body needs and we buy him super organic vegtables, your body needs all that , and the nutrient cans don't give him that, and the first year jack had his feeding tube, he did not loose one pound, never got it clog never got it infected, he did not loose the weight until some stupid nurse in the hospital said oh he should be on jevity it is so much better, well with a month on that he lost 15 pounds, he was doing great, before everyone got in to being the King Nutrientist, I only listen to his license dietician, Now , we had to learn the hard way, and now it is a stuggle to get him to gain the weight back, Think about it jevity is very high in fiber what do people do when they are on a diet they take more fiber to fill them up so they eat less, And I don;t need to be told what to do when I go to a doctors appointment especially in a mean way, I have worked in doctors offices for 15 years, especially with elderly , So Im very capable of asking what I need to know, it is just so upsetting that this guy is just rude to caretakers, This guy Joe should try be a care taker for someone 24/7 and then tell us caretakers we don;t knowwhat we are doing, but Trust me Karma will find him and he should just hope he will have a caretaker who is to doing there best to take care of him, but with Karma you always loose in the end,

    One Thing I Have Learned
    The one thing I have learned during this whole experience is everyone will always have their own opinions!

    I am always trying to stay one step ahead of the game (as it seems like you do as well) and have already been researching alternatives in case the doctors say there is nothing more that they can do for my husband once this next round of treatment is done.

    I mentioned this to someone I thought was a very good friend of mine and she actually was questionning WHY I would even be researching other options. Her opinion was basically if your doctor says nothing else can be done why would you waste time being together trying to find soemthing else? WHY??? Maybe because someplace else has more state of the art technology or knows of a newer drug or something and I won't give up fighting.

    As for nutrition, like I said before you need to listen to the doctors and staff supporting Jack.....no matter how much everyone here wants to be helpful and is trying to give the best advice based on their situation, no one here knows the specifics better that Jack's doctors and nutritionists. And of course every doctor, nurse, nutriotionist, etc has their own advice on what is "the best" -- it's no different than anything else -- just like some people love Puff's tissues because they are softer -- some are loyal to Kleenex -- same with doctors and medications and nutrionists and feeds.

    Keep following what they tell you, take what you read with a grain of salt and you'll be fine!!!

    Best Wishes!!
  • trish07
    trish07 Member Posts: 138

    Not walking away
    I was going to walk away from this site because of some guy , but you know I have been fighting cancer with Jack for the last year, and I will be dam if I let some guy bring me down, you can not take my fighting spirit, Cancer might make me cry and upset me but oh hell no this Joe will not do this to me, Karma will take care of you , when you bad talk a caretaker it will come back to bite you in the butt!!


    Before everyone response they should read all the facts, Yes jack has a feeding tube he is not on jevity, because it has too much fiber and all he did was loose weight, Hei is on isosource which is a medical nutrient drink that has 375 calories per can the nutrient advised us to add honey or his protein powder and we put it in a blender and thin it out, So no one is putting straight honey in his tube, it just give Jack some extra carbs that your body needs and we buy him super organic vegtables, your body needs all that , and the nutrient cans don't give him that, and the first year jack had his feeding tube, he did not loose one pound, never got it clog never got it infected, he did not loose the weight until some stupid nurse in the hospital said oh he should be on jevity it is so much better, well with a month on that he lost 15 pounds, he was doing great, before everyone got in to being the King Nutrientist, I only listen to his license dietician, Now , we had to learn the hard way, and now it is a stuggle to get him to gain the weight back, Think about it jevity is very high in fiber what do people do when they are on a diet they take more fiber to fill them up so they eat less, And I don;t need to be told what to do when I go to a doctors appointment especially in a mean way, I have worked in doctors offices for 15 years, especially with elderly , So Im very capable of asking what I need to know, it is just so upsetting that this guy is just rude to caretakers, This guy Joe should try be a care taker for someone 24/7 and then tell us caretakers we don;t knowwhat we are doing, but Trust me Karma will find him and he should just hope he will have a caretaker who is to doing there best to take care of him, but with Karma you always loose in the end,

    Good for You!
    Glad to see you are back! We caretakers are strong, and when we are kicked, we manage to get right back up.
    I relate to the high calorie intake. In a matter of 4.5 months my husband had 3 surgerys. He went from being a strong 200lbs. down to 132 lbs., he was simply nothing more than skin and bones. He also had an ileostomy which made it impossible to get weight back on him due to the large amount of output. The visiting nurse [ once a week ] kept saying "oh, just supplement him with some ensure,he'll do just fine". Well, he didn't do "just fine". I started supplementing his meals with a high calorie super protein powder that I bought at a store for weight lifters called True Mass which I mixed with milk.
    He now weighs 180 lbs. [ no longer on the protein drink ] he went from not being able to walk without my help from shear weakness of wasting away to old self of "What's to eat?" and "can I have some more?".
    I told the Onco. what I was giving him, his mother seemed a bit questionably concerned when she was bringing cottage cheese and Flaxseed oil {sure to cure his rare cancer!}
    I knew others meant well, but when you are someones sole,round the clock caregiver,you know best.


    Trish
  • newbride
    newbride Member Posts: 142
    trish07 said:

    Good for You!
    Glad to see you are back! We caretakers are strong, and when we are kicked, we manage to get right back up.
    I relate to the high calorie intake. In a matter of 4.5 months my husband had 3 surgerys. He went from being a strong 200lbs. down to 132 lbs., he was simply nothing more than skin and bones. He also had an ileostomy which made it impossible to get weight back on him due to the large amount of output. The visiting nurse [ once a week ] kept saying "oh, just supplement him with some ensure,he'll do just fine". Well, he didn't do "just fine". I started supplementing his meals with a high calorie super protein powder that I bought at a store for weight lifters called True Mass which I mixed with milk.
    He now weighs 180 lbs. [ no longer on the protein drink ] he went from not being able to walk without my help from shear weakness of wasting away to old self of "What's to eat?" and "can I have some more?".
    I told the Onco. what I was giving him, his mother seemed a bit questionably concerned when she was bringing cottage cheese and Flaxseed oil {sure to cure his rare cancer!}
    I knew others meant well, but when you are someones sole,round the clock caregiver,you know best.


    Trish

    Trish
    I had to laugh when you said about his mother bring cottage cheese and flaxseed to "cure" his "rare cancer" -- yeah I get that SOOOOO much here everyone thinks they have the miracle cure for my husband.
  • ruthelizabeth
    ruthelizabeth Member Posts: 138
    newbride said:

    Trish
    I had to laugh when you said about his mother bring cottage cheese and flaxseed to "cure" his "rare cancer" -- yeah I get that SOOOOO much here everyone thinks they have the miracle cure for my husband.

    Oh, yes, those miracle cures
    My husband's oldest is a vegetarian and gave us a recipe for the miracle cure. Don refused to have anything to do with it. I told her it was his choice. I've also been told about a homeopathic dr. who'd never lost a patient. But if you make the wrong choice, you lose time and can never get it back. If you trust your oncologist and he's connected to a good cancer center, you have to be careful about what miracle cure you hear about.
  • newbride
    newbride Member Posts: 142

    Oh, yes, those miracle cures
    My husband's oldest is a vegetarian and gave us a recipe for the miracle cure. Don refused to have anything to do with it. I told her it was his choice. I've also been told about a homeopathic dr. who'd never lost a patient. But if you make the wrong choice, you lose time and can never get it back. If you trust your oncologist and he's connected to a good cancer center, you have to be careful about what miracle cure you hear about.

    Yup
    Oh the best is his ex who bought us 2 cookbooks -- ok the one is eating healthy during chemo which I have to see if pretty good and was good in the beginning when he was able to eat soft foods and smoothies, the other is mostly about whole grains etc - which he can't eat. Gotta love these people who "think" they are helping
  • Tami2501
    Tami2501 Member Posts: 12
    trish07 said:

    Good for You!
    Glad to see you are back! We caretakers are strong, and when we are kicked, we manage to get right back up.
    I relate to the high calorie intake. In a matter of 4.5 months my husband had 3 surgerys. He went from being a strong 200lbs. down to 132 lbs., he was simply nothing more than skin and bones. He also had an ileostomy which made it impossible to get weight back on him due to the large amount of output. The visiting nurse [ once a week ] kept saying "oh, just supplement him with some ensure,he'll do just fine". Well, he didn't do "just fine". I started supplementing his meals with a high calorie super protein powder that I bought at a store for weight lifters called True Mass which I mixed with milk.
    He now weighs 180 lbs. [ no longer on the protein drink ] he went from not being able to walk without my help from shear weakness of wasting away to old self of "What's to eat?" and "can I have some more?".
    I told the Onco. what I was giving him, his mother seemed a bit questionably concerned when she was bringing cottage cheese and Flaxseed oil {sure to cure his rare cancer!}
    I knew others meant well, but when you are someones sole,round the clock caregiver,you know best.


    Trish

    New Caregiver
    I am a new caregiver and new to this site. I was so relieved when I found that Caregivers had a post too. I cannot imagine doing this for years and years. My husband was recently diagnosed with cancer and started chemo last week. Just managing nausea, vomiting, medications, and emotions have been enough to put me over the edge. One minute I find I am strong as an ox, supporting him and careing for him, the next I am crying like a baby. My heart goes out to you all who have battled this much longer than I.

    Trish what you say is so true. As the caregiver, you know best. I take notes at each visit, log when he gets his meds, and I also double check everything. Medications, doses, frequency, etc. We all come from different back grounds and we should not have to justify to anyone why we do what we do. I can't believe someone would respond to 'pattynonews' that way. Regardless of whether he was stating facts or trying to help. Somethings are better left unsaid. Sometimes in an effort to provide facts or advice, others come across as cold and unfeeling to the caregiver, completley forgetting that they are in this fight too.

    I read somewhere in another post about us caregivers being a little territorial. So true and I have never realized it until now. I know what is best for my man, I would never harm him, but I would do anything to protect him. I recently compared my experience caring for him to caring for my children when they were sick. It is nearly the same but much, much more intense.

    I am hoping to find some peace by talking to others who are also caring. My heart goes out to you all.

    Tami
  • pattynonews
    pattynonews Member Posts: 176
    trish07 said:

    Good for You!
    Glad to see you are back! We caretakers are strong, and when we are kicked, we manage to get right back up.
    I relate to the high calorie intake. In a matter of 4.5 months my husband had 3 surgerys. He went from being a strong 200lbs. down to 132 lbs., he was simply nothing more than skin and bones. He also had an ileostomy which made it impossible to get weight back on him due to the large amount of output. The visiting nurse [ once a week ] kept saying "oh, just supplement him with some ensure,he'll do just fine". Well, he didn't do "just fine". I started supplementing his meals with a high calorie super protein powder that I bought at a store for weight lifters called True Mass which I mixed with milk.
    He now weighs 180 lbs. [ no longer on the protein drink ] he went from not being able to walk without my help from shear weakness of wasting away to old self of "What's to eat?" and "can I have some more?".
    I told the Onco. what I was giving him, his mother seemed a bit questionably concerned when she was bringing cottage cheese and Flaxseed oil {sure to cure his rare cancer!}
    I knew others meant well, but when you are someones sole,round the clock caregiver,you know best.


    Trish

    where did you buy the protein drink
    where do you get that True Mass, GNC ? I go there to get jack weigh gain , He did gain a pound since Monday, so my method of madness must not be to bad, I just heard on the news that they are making fried butter in Texas and the dietician said if you eat just 4 of teaspoons of butter ( real butter ) you will gain so much weigh, So hell maybe I will add a teaspoon of butter in the blender when I make his shakes, actually Jack said he use to do that, But that isosource is great, it has 375 calories per can, and then the dietician gave us jeven which is like a supplement you add to his water ( and it can be but through the tube ) and it builds his muscle mass, and helps the immune system you can also drink it, It comes in orange and grape flavor, The chemo did a number on his muscles tone, Jack energy level is low, right now, and moves slow, which is hard to see, this is a guy who has played drums professional for 30 years, and playing the drums takes alot of upper body work and he would play for hours, now he attends to his lettle garden , muffles around the house and he is tired, He played the drums last week for about 30 minutes and he was toast after that, I feel bad for him the drums is his life and he can't do it, We have the drums set up and he will go play here and there, We are waiting for the appointments for his pik line to be put in , do you know anything about them we decided to go with the pik line, because Jack has alot of concerns about a new port being put in and it getting infected, And I have to make some calls tomorrow, we have been waiting for his insurance company to approve his wheelchair, I guess I am going to have to call them directly, his dme company keeps telling oh, its not approved yet, and Jack would like to go with me around the neighborhood to walk the dog,
  • trish07
    trish07 Member Posts: 138

    where did you buy the protein drink
    where do you get that True Mass, GNC ? I go there to get jack weigh gain , He did gain a pound since Monday, so my method of madness must not be to bad, I just heard on the news that they are making fried butter in Texas and the dietician said if you eat just 4 of teaspoons of butter ( real butter ) you will gain so much weigh, So hell maybe I will add a teaspoon of butter in the blender when I make his shakes, actually Jack said he use to do that, But that isosource is great, it has 375 calories per can, and then the dietician gave us jeven which is like a supplement you add to his water ( and it can be but through the tube ) and it builds his muscle mass, and helps the immune system you can also drink it, It comes in orange and grape flavor, The chemo did a number on his muscles tone, Jack energy level is low, right now, and moves slow, which is hard to see, this is a guy who has played drums professional for 30 years, and playing the drums takes alot of upper body work and he would play for hours, now he attends to his lettle garden , muffles around the house and he is tired, He played the drums last week for about 30 minutes and he was toast after that, I feel bad for him the drums is his life and he can't do it, We have the drums set up and he will go play here and there, We are waiting for the appointments for his pik line to be put in , do you know anything about them we decided to go with the pik line, because Jack has alot of concerns about a new port being put in and it getting infected, And I have to make some calls tomorrow, we have been waiting for his insurance company to approve his wheelchair, I guess I am going to have to call them directly, his dme company keeps telling oh, its not approved yet, and Jack would like to go with me around the neighborhood to walk the dog,

    True Mass Info...
    Sorry for the delay Patty...I'm in California and with the time difference it seems alot of people are sleeping [ or trying to ] by the time I get back on in the evening.
    I purchase True Mass at a store called Max Muscle but I found it online for you to check out. WWW.bsnonline.net...click on bodybuilding & extreme physique enhancement...on next page scroll down and click on Lean Mass Gainer. They also have a Supplement Advice Hotline...1-877-673-3727.

    My husband lost all his muscle tone also, so although I got the weight back on him,he still looks much thinner than before. I'd say go for it with the butter, never thought of adding it [ but everythings better with butter! ].
    I don't know anything about pik lines, sorry. Hope you get your wheel chair soon, its such a big help. Had a hard time getting my husband to use it, when their used to being strong and capable men I guess it hurts their pride a bit. He loves the big Hot Rod Shows and I knew he couldn't go without a wheelchair. He loved being able to go with constant assurances from me that it wouldn't matter what anyone thought...he had a great time, although I ended up with blisters all over my feet...but thats o.k.


    Take Care, Trish
  • newbride
    newbride Member Posts: 142

    where did you buy the protein drink
    where do you get that True Mass, GNC ? I go there to get jack weigh gain , He did gain a pound since Monday, so my method of madness must not be to bad, I just heard on the news that they are making fried butter in Texas and the dietician said if you eat just 4 of teaspoons of butter ( real butter ) you will gain so much weigh, So hell maybe I will add a teaspoon of butter in the blender when I make his shakes, actually Jack said he use to do that, But that isosource is great, it has 375 calories per can, and then the dietician gave us jeven which is like a supplement you add to his water ( and it can be but through the tube ) and it builds his muscle mass, and helps the immune system you can also drink it, It comes in orange and grape flavor, The chemo did a number on his muscles tone, Jack energy level is low, right now, and moves slow, which is hard to see, this is a guy who has played drums professional for 30 years, and playing the drums takes alot of upper body work and he would play for hours, now he attends to his lettle garden , muffles around the house and he is tired, He played the drums last week for about 30 minutes and he was toast after that, I feel bad for him the drums is his life and he can't do it, We have the drums set up and he will go play here and there, We are waiting for the appointments for his pik line to be put in , do you know anything about them we decided to go with the pik line, because Jack has alot of concerns about a new port being put in and it getting infected, And I have to make some calls tomorrow, we have been waiting for his insurance company to approve his wheelchair, I guess I am going to have to call them directly, his dme company keeps telling oh, its not approved yet, and Jack would like to go with me around the neighborhood to walk the dog,

    Wheelchair
    Patty if you need a wheelchair right away or your insurance does not approve it most Rescue or Fire Departments will lend them out. We only needed one for about 2 weeks about my husband's surgery and I rented it from a local drug store - it was $25 for the 2 weeks, not bad. Afterwards I was talking to a friend who's husband works for the fire department and he told me that they always have them on hand and loan them out for no charge. You might want to look into that as an option as well until you can get a permanent one (if a permanent one is needed)
  • RE
    RE Member Posts: 4,591 Member
    Suggestions
    Hi Patty,

    First let me say am I sorry you and your loved one are having to go down this road. I have had cancer 3 times and have assisted with the care giving for both my Mother and my Sister. That said I too read this post and your original post with Soccers response and I have to say it is my opinion he was only attempting to give you suggestions that may help with your situation since he too has been down a similar road and has some knowledge in that area. I truly do not think he was being cruel. It is a common practice among many cancer patients and caregivers to take notepads with them to the doctor to both jot down what the doc says and to remind us what we wanted to ask. This is such an emotional illness we do not all recall what the doctor tells us and sometimes we forget to ask questions we may have. I myself do this and have been doing so for 12 years now, it is very helpful Anyway that is my two cents, I am glad you are not leaving the site as there is much support and information to be found here even if we do not agree with all of it.

    I wish you and your loved one all the best,

    RE
  • pattynonews
    pattynonews Member Posts: 176
    In regards to everyone
    In regards to everyone telling me that this guy soccerfreak was being supported then you need to actually read everything, his sacrism is totally unnecessaty

    These are the comments I did not like that he posted
    My feeling, based on a comparison of your posts here and especially between here and elsewhere in the boards, where the facts change at least marginally, is that things are not adding up.
    (It is also time to make sure your posts compare favorably from one board to another.)

    The idea that you would be trying to negotiate someone's pain medications (a previous post) while apparently incorrectly recalling these other very important details is straight out of a Stephen King novel, if such is the case.

    And third he was wrong I do not give Jack 5000 calories of straight protin all the calories added some days come up to 5000 calories some day they don't.

    And my understanding this is not the first time he has been rude to a caretaker on this site, and some people might think it is acceptable for him to speak to me this way , but it is not with me,

    And if he is such a caring supportive perosn not once has he apologize, I don;t call that caring or supporting,
  • pattynonews
    pattynonews Member Posts: 176
    trish07 said:

    True Mass Info...
    Sorry for the delay Patty...I'm in California and with the time difference it seems alot of people are sleeping [ or trying to ] by the time I get back on in the evening.
    I purchase True Mass at a store called Max Muscle but I found it online for you to check out. WWW.bsnonline.net...click on bodybuilding & extreme physique enhancement...on next page scroll down and click on Lean Mass Gainer. They also have a Supplement Advice Hotline...1-877-673-3727.

    My husband lost all his muscle tone also, so although I got the weight back on him,he still looks much thinner than before. I'd say go for it with the butter, never thought of adding it [ but everythings better with butter! ].
    I don't know anything about pik lines, sorry. Hope you get your wheel chair soon, its such a big help. Had a hard time getting my husband to use it, when their used to being strong and capable men I guess it hurts their pride a bit. He loves the big Hot Rod Shows and I knew he couldn't go without a wheelchair. He loved being able to go with constant assurances from me that it wouldn't matter what anyone thought...he had a great time, although I ended up with blisters all over my feet...but thats o.k.


    Take Care, Trish

    Im going to go check out
    Im going to go check out that web site, Jack has been resting most of thw day, he is really tired, But I was told that when he rest like this it is a sign that his body needs it and it is regrouping, Yea Jack would love to get out we have the river walk out here in texas and I would love to take him Jack can walk he just gets tired, He misses going to the bars at nights and seeing the live bands, Because of all the smoke in the bars, it bothers him, and spirtually it takes alot out of him because he wants to be up there playing the drums, I know next week we have a busy week, before treatment starts, They have to put his pik line in and they are going to change out his peg tube, because it is over a year old and he has to see the doctor on Firday to clear him for cheom . I also got hooked up with a therpist at the cancer center, someone for me to go talk to , Another treatment, hopefully this is going to be the one, Jack has alot of hope, so that is good, It has been hard, but I am learning on these days that Jack rest alot , just let him rest and learning to do things to keep myself busy, plus Jack;s 85 year old dad came home so I have him to take care too, So I have two on them to take care, So now Im am pretty busy,

    Well take care
  • seanslove
    seanslove Member Posts: 70

    In regards to everyone
    In regards to everyone telling me that this guy soccerfreak was being supported then you need to actually read everything, his sacrism is totally unnecessaty

    These are the comments I did not like that he posted
    My feeling, based on a comparison of your posts here and especially between here and elsewhere in the boards, where the facts change at least marginally, is that things are not adding up.
    (It is also time to make sure your posts compare favorably from one board to another.)

    The idea that you would be trying to negotiate someone's pain medications (a previous post) while apparently incorrectly recalling these other very important details is straight out of a Stephen King novel, if such is the case.

    And third he was wrong I do not give Jack 5000 calories of straight protin all the calories added some days come up to 5000 calories some day they don't.

    And my understanding this is not the first time he has been rude to a caretaker on this site, and some people might think it is acceptable for him to speak to me this way , but it is not with me,

    And if he is such a caring supportive perosn not once has he apologize, I don;t call that caring or supporting,

    Pattynonews
    Pattynonews,

    So many times I have read posts here which I thought were uncalled for responses and yet,I try to keep away from those,as I first came here as a caregiver to my husband with stage four cancer,and now three months later I am here as a widow. I all too well know the deepths of frustration and upset which can come from reading some of these posts as I feel for those who are under attack and even more so for those who are walking this tight rope of cancer with the one whom they love.
    I think.as much as I came here for support,more often or not,I came here to realize what I was doing or not doing was ok. Being a pysch major right now,I believe we all seek out someone to tell us it's ok,as we all seek approval from others. I'll give you a case in point. The day after I buried my Sean,I was going crazy,and wanted to get out of the house evem for just few momnets,yet felt it was wrong to leave. Get this,a 39 year old women affriad to leave her own house. I tried calling everyone in my phone,yet,no one was either up or answering,go figure. So what did I do you ask? Well first I went to the cell phone store and turned his cell phone off,which for some crazy reason I walked out side and placed a call to,ok I'm a little upset.
    Then,beings it was noon,and at noon on Sunday's prior to him getting sick,we used to go to the Tavern on the Main for lunch and a couple Keno games and watch the NFL or MLB,which ever season it was at the present. Therefore,knowing all our friends from there would be there,I pulled up my emotions and off to the main I went. Everyone there was so glad to see me as well as shocked,however,this has become my Sunday routine the last few weeks,and when I was late this past Sunday they were worried about where I was,and said they were about to send out a search party for me,we don't live far,so they wouldn't have had far to search,lol.
    I guess my point is,when we are walking the path we are walking,there are no right or wrong answers,as I am dicovering,and many will say things to us which will bring more than tears,but also hard emotions. I had someone tell me yesterday,"Oh I know just what your going through,I lost my dog 8 years ago and I know how upset you are." OMG<I thought I would die at someone comparing the loss of their pet to the loss of my entire universe,of which I asked them could you still function and live without your dog,well yes they responded,to which I said,I can not with out my heart and soul also known as Sean.
    Trust me,I am in no shape or form taking up for those whom make statements that hurt us,because I believe it is without warrent or need,some people just don't get it and sadly never will. Please don't leave this site because of someone's lack of couth in statements,as if I had,I would have missed the chance to meet so many wonderful people who have made such a difference in my life. I,like many,need this site more now than ever,and really would be sad not to read your posts again. I will keep you both in my thoughts and prayers.