Plain and Simple : I need you folk.

2

Comments

  • Clearblue
    Clearblue Member Posts: 186
    #22
    Jan Trinks said:

    Clear, You're a Trooper
    Hi Clear:

    My husband's battle was not for 14 years, yet we were married for 35 years. So, I too, like Skipper know what you're going through. Our support group was our church family, family, but a lot of support came from the oncologist's office and the radiation onc. office. We were truly blessed to have been with such two caring docs and their staffs were superb. When Charlie passed away they both were so good. Charlie was quite an avid Tarheel fan especially basketball; so as Jimmy V said, "Never give up!" The only way to deal with this beast is to have faith, a lot of prayer and do everything you can to keep a positive attitude even when the chips down and that is hard to do! Best of luck to you and your wife and you both are in my prayers! God Bless!

    Jan (aka Basketcase)

    Three focused issues befor we're burned at the stake
    I know there has been much contribution re dealing with mouth sores and teeth.
    Can u tell me what course of action your dentists recomended BEFORE RT started (besides oral hygienist + preparing gum guard ).

    I was told this by a caregiver: What's your opinion? "Don't use anything with Zinc in it - this makes the radiation stronger in the areas you put zinc. You can't put the aquafor on before radiation or anything with a petroleum base or it will block the radiation. Only after treatment."

    My wife had her j-tube put in to lower intestine, but it has been so painful that she hant used it yet. SHe has thrown up this weekend for some reason, something taht didnt happen before she had it inserted.
    Clear
  • adventurebob
    adventurebob Member Posts: 691
    #23
    Stuff that helped me
    Hi Clear,
    I'm sorry to read about your ordeal. Radiation is pretty hard-core and the biggest hit for me came after it was all done. Here are the things that helped me:

    1. pure organic aloe vera gel; healed the burns so incredibly fast
    2. pure organic coconut oil; moistened the skin and smelled good
    3. pure organic olive oil; moistened the skin
    4. maximum strength anit-itch cream with 1% hydrocortisone; stopped the itching
    5. super soft organic cotton v-neck t-shirts; only thing that felt good on my skin
    6. pillowcases that could get all greasy and ruined and then thrown out
    7. my favorite music to listen to during radiation (I plugged in my own mp3 player)
    8. exercise; walking daily as much as I could
    9. all organic vegan diet
    10. prayer(I asked God to bless the linear accelerator and to protect me every time)
    11. Biotene products; toothpaste, mouth spray, night-time gel
    12. accupuncture; 2-4 times weekly
    13. Chinese herbs and supplements; check out pinestreetclinic.com, they do over the phone consultations
    14. daily coffee enemas to get rid of the toxins as fast as possible
    15. Love from God, family and friends
    16. A place to go afterward to process the experience and rest and heal that is not home; check out commonweal.org
    17. A nice cat to cuddle with on really crappy days. A good dog would work too.
    18. A big old floppy sun hat to hide my tender skin
    19. funny movies; laughter changes how I feel faster than any drug ever invented.
    20. this board; knowing that others have done it, are doing it or are getting ready to do it.

    Hope that helps some. I'll be praying for you and your wife.

    Bob
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #24
    adventurebob said:

    Stuff that helped me
    Hi Clear,
    I'm sorry to read about your ordeal. Radiation is pretty hard-core and the biggest hit for me came after it was all done. Here are the things that helped me:

    1. pure organic aloe vera gel; healed the burns so incredibly fast
    2. pure organic coconut oil; moistened the skin and smelled good
    3. pure organic olive oil; moistened the skin
    4. maximum strength anit-itch cream with 1% hydrocortisone; stopped the itching
    5. super soft organic cotton v-neck t-shirts; only thing that felt good on my skin
    6. pillowcases that could get all greasy and ruined and then thrown out
    7. my favorite music to listen to during radiation (I plugged in my own mp3 player)
    8. exercise; walking daily as much as I could
    9. all organic vegan diet
    10. prayer(I asked God to bless the linear accelerator and to protect me every time)
    11. Biotene products; toothpaste, mouth spray, night-time gel
    12. accupuncture; 2-4 times weekly
    13. Chinese herbs and supplements; check out pinestreetclinic.com, they do over the phone consultations
    14. daily coffee enemas to get rid of the toxins as fast as possible
    15. Love from God, family and friends
    16. A place to go afterward to process the experience and rest and heal that is not home; check out commonweal.org
    17. A nice cat to cuddle with on really crappy days. A good dog would work too.
    18. A big old floppy sun hat to hide my tender skin
    19. funny movies; laughter changes how I feel faster than any drug ever invented.
    20. this board; knowing that others have done it, are doing it or are getting ready to do it.

    Hope that helps some. I'll be praying for you and your wife.

    Bob

    Clearblue and wife:
    I have to tell you I didn't sleep all night last night and I have been thinking about you guys. I am thinking by now she has had he first treatment under her belt and I am hoping everything went well.

    Just wanted to let you know that I am still praying everyday.

    Hugs and blessings~

    Sweet
  • Clearblue
    Clearblue Member Posts: 186
    #25
    sweetblood22 said:

    Clearblue and wife:
    I have to tell you I didn't sleep all night last night and I have been thinking about you guys. I am thinking by now she has had he first treatment under her belt and I am hoping everything went well.

    Just wanted to let you know that I am still praying everyday.

    Hugs and blessings~

    Sweet

    Trying to keep our wits about us
    TNX,and apologies for my dire lack of response to your posts.
    She has had one dose of erbitux and will have the second on monday followed by her first Rad.
    Hope to get more details re dosage from the Onco by end of this week.
    In the meanwhile her j-tube is really painful and she hasnt been able to use it almost since they put it in. So the thing designed to boost has been the source of lack of nutrician. SHe has thrown up for three days most of what she eats. Dont know if its from the J-tube itself or something else. Its been like 6 weeks since we had the PET. Squamus doesnt waste time.Trying to keep our wits about us.

    Below is my basic list to keep tabs of basic care , based on your generous responses to my post. Any ideas as to how i should organize this list (or add to it) , will be appreciated.
    My wife will have my head on the chopping block when she finds out about this post. She correctly demands of me to "be more modest and not arrogant in deciding in advance the horrors that will be inflicted on her!"

    Just havent had a moment to read thro all the latest posts.

    Clear

    Date Situation Treatment throat
    breathing
    coughing
    neck (muscular)
    voice
    medications:
    mouth (sores, etc)
    saliva
    teeth
    taste
    jaw
    neck
    skin
    Eating
    solid foods
    liquids
    weight
    energy (mentally alert)
    fatigue (how tired)
    ears left
    ears right
    hrs sleep
    Emotional (up or down feeling)
    feeding tube issues
    skin creams/gels
    lab work: blood etc
    blood pressure
    MEDICAL TEAM: Name, Department, Phone Number
    radiation oncologist
    medical oncology nurse
    dietician
    pain management
    need to tell a new doctor :

    allergic reactions: medication+ reaction
    Supplies Needed:
    skin neck and chest
    mouth rinse
    toothpaste
    foam brush teeth
    gauze
    remedies
    caphosol
    biotene mouth wash
    bicarbonate sodaaveeno anti itch
    Glutamine powder- swish and swallow
    magic mouth wash
    Aveeno Maximum Strength 1% Hydrocortisone Anti-Itch Cream w
    aquafor
    humidifier
    issues : constipation
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #26
    Clearblue said:

    Trying to keep our wits about us
    TNX,and apologies for my dire lack of response to your posts.
    She has had one dose of erbitux and will have the second on monday followed by her first Rad.
    Hope to get more details re dosage from the Onco by end of this week.
    In the meanwhile her j-tube is really painful and she hasnt been able to use it almost since they put it in. So the thing designed to boost has been the source of lack of nutrician. SHe has thrown up for three days most of what she eats. Dont know if its from the J-tube itself or something else. Its been like 6 weeks since we had the PET. Squamus doesnt waste time.Trying to keep our wits about us.

    Below is my basic list to keep tabs of basic care , based on your generous responses to my post. Any ideas as to how i should organize this list (or add to it) , will be appreciated.
    My wife will have my head on the chopping block when she finds out about this post. She correctly demands of me to "be more modest and not arrogant in deciding in advance the horrors that will be inflicted on her!"

    Just havent had a moment to read thro all the latest posts.

    Clear

    Date Situation Treatment throat
    breathing
    coughing
    neck (muscular)
    voice
    medications:
    mouth (sores, etc)
    saliva
    teeth
    taste
    jaw
    neck
    skin
    Eating
    solid foods
    liquids
    weight
    energy (mentally alert)
    fatigue (how tired)
    ears left
    ears right
    hrs sleep
    Emotional (up or down feeling)
    feeding tube issues
    skin creams/gels
    lab work: blood etc
    blood pressure
    MEDICAL TEAM: Name, Department, Phone Number
    radiation oncologist
    medical oncology nurse
    dietician
    pain management
    need to tell a new doctor :

    allergic reactions: medication+ reaction
    Supplies Needed:
    skin neck and chest
    mouth rinse
    toothpaste
    foam brush teeth
    gauze
    remedies
    caphosol
    biotene mouth wash
    bicarbonate sodaaveeno anti itch
    Glutamine powder- swish and swallow
    magic mouth wash
    Aveeno Maximum Strength 1% Hydrocortisone Anti-Itch Cream w
    aquafor
    humidifier
    issues : constipation

    Thanks for taken time to update.
    "My wife will have my head on the chopping block when she finds out about this post. She correctly demands of me to "be more modest and not arrogant in deciding in advance the horrors that will be inflicted on her!"

    I like your wife! She is stubborn and feisty like me! :) It is better to be prepared tho. Forewarned is fore armed and all that. Your list seems pretty good. I think you are prepared as much can be. Way more prepared than I was going in for sure. That's good.

    Thanks again for the update. Sorry she is having so much trouble with that j tube. Hang in there and I am always praying. Please update when you can.

    <3
    Sweets
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #27
    Clearblue said:

    Trying to keep our wits about us
    TNX,and apologies for my dire lack of response to your posts.
    She has had one dose of erbitux and will have the second on monday followed by her first Rad.
    Hope to get more details re dosage from the Onco by end of this week.
    In the meanwhile her j-tube is really painful and she hasnt been able to use it almost since they put it in. So the thing designed to boost has been the source of lack of nutrician. SHe has thrown up for three days most of what she eats. Dont know if its from the J-tube itself or something else. Its been like 6 weeks since we had the PET. Squamus doesnt waste time.Trying to keep our wits about us.

    Below is my basic list to keep tabs of basic care , based on your generous responses to my post. Any ideas as to how i should organize this list (or add to it) , will be appreciated.
    My wife will have my head on the chopping block when she finds out about this post. She correctly demands of me to "be more modest and not arrogant in deciding in advance the horrors that will be inflicted on her!"

    Just havent had a moment to read thro all the latest posts.

    Clear

    Date Situation Treatment throat
    breathing
    coughing
    neck (muscular)
    voice
    medications:
    mouth (sores, etc)
    saliva
    teeth
    taste
    jaw
    neck
    skin
    Eating
    solid foods
    liquids
    weight
    energy (mentally alert)
    fatigue (how tired)
    ears left
    ears right
    hrs sleep
    Emotional (up or down feeling)
    feeding tube issues
    skin creams/gels
    lab work: blood etc
    blood pressure
    MEDICAL TEAM: Name, Department, Phone Number
    radiation oncologist
    medical oncology nurse
    dietician
    pain management
    need to tell a new doctor :

    allergic reactions: medication+ reaction
    Supplies Needed:
    skin neck and chest
    mouth rinse
    toothpaste
    foam brush teeth
    gauze
    remedies
    caphosol
    biotene mouth wash
    bicarbonate sodaaveeno anti itch
    Glutamine powder- swish and swallow
    magic mouth wash
    Aveeno Maximum Strength 1% Hydrocortisone Anti-Itch Cream w
    aquafor
    humidifier
    issues : constipation

    .
    Repeat post
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #28
    Clearblue said:

    Trying to keep our wits about us
    TNX,and apologies for my dire lack of response to your posts.
    She has had one dose of erbitux and will have the second on monday followed by her first Rad.
    Hope to get more details re dosage from the Onco by end of this week.
    In the meanwhile her j-tube is really painful and she hasnt been able to use it almost since they put it in. So the thing designed to boost has been the source of lack of nutrician. SHe has thrown up for three days most of what she eats. Dont know if its from the J-tube itself or something else. Its been like 6 weeks since we had the PET. Squamus doesnt waste time.Trying to keep our wits about us.

    Below is my basic list to keep tabs of basic care , based on your generous responses to my post. Any ideas as to how i should organize this list (or add to it) , will be appreciated.
    My wife will have my head on the chopping block when she finds out about this post. She correctly demands of me to "be more modest and not arrogant in deciding in advance the horrors that will be inflicted on her!"

    Just havent had a moment to read thro all the latest posts.

    Clear

    Date Situation Treatment throat
    breathing
    coughing
    neck (muscular)
    voice
    medications:
    mouth (sores, etc)
    saliva
    teeth
    taste
    jaw
    neck
    skin
    Eating
    solid foods
    liquids
    weight
    energy (mentally alert)
    fatigue (how tired)
    ears left
    ears right
    hrs sleep
    Emotional (up or down feeling)
    feeding tube issues
    skin creams/gels
    lab work: blood etc
    blood pressure
    MEDICAL TEAM: Name, Department, Phone Number
    radiation oncologist
    medical oncology nurse
    dietician
    pain management
    need to tell a new doctor :

    allergic reactions: medication+ reaction
    Supplies Needed:
    skin neck and chest
    mouth rinse
    toothpaste
    foam brush teeth
    gauze
    remedies
    caphosol
    biotene mouth wash
    bicarbonate sodaaveeno anti itch
    Glutamine powder- swish and swallow
    magic mouth wash
    Aveeno Maximum Strength 1% Hydrocortisone Anti-Itch Cream w
    aquafor
    humidifier
    issues : constipation

    Dble post. 
  • buzz99
    buzz99 Member Posts: 404
    #29
    Clearblue said:

    Trying to keep our wits about us
    TNX,and apologies for my dire lack of response to your posts.
    She has had one dose of erbitux and will have the second on monday followed by her first Rad.
    Hope to get more details re dosage from the Onco by end of this week.
    In the meanwhile her j-tube is really painful and she hasnt been able to use it almost since they put it in. So the thing designed to boost has been the source of lack of nutrician. SHe has thrown up for three days most of what she eats. Dont know if its from the J-tube itself or something else. Its been like 6 weeks since we had the PET. Squamus doesnt waste time.Trying to keep our wits about us.

    Below is my basic list to keep tabs of basic care , based on your generous responses to my post. Any ideas as to how i should organize this list (or add to it) , will be appreciated.
    My wife will have my head on the chopping block when she finds out about this post. She correctly demands of me to "be more modest and not arrogant in deciding in advance the horrors that will be inflicted on her!"

    Just havent had a moment to read thro all the latest posts.

    Clear

    Date Situation Treatment throat
    breathing
    coughing
    neck (muscular)
    voice
    medications:
    mouth (sores, etc)
    saliva
    teeth
    taste
    jaw
    neck
    skin
    Eating
    solid foods
    liquids
    weight
    energy (mentally alert)
    fatigue (how tired)
    ears left
    ears right
    hrs sleep
    Emotional (up or down feeling)
    feeding tube issues
    skin creams/gels
    lab work: blood etc
    blood pressure
    MEDICAL TEAM: Name, Department, Phone Number
    radiation oncologist
    medical oncology nurse
    dietician
    pain management
    need to tell a new doctor :

    allergic reactions: medication+ reaction
    Supplies Needed:
    skin neck and chest
    mouth rinse
    toothpaste
    foam brush teeth
    gauze
    remedies
    caphosol
    biotene mouth wash
    bicarbonate sodaaveeno anti itch
    Glutamine powder- swish and swallow
    magic mouth wash
    Aveeno Maximum Strength 1% Hydrocortisone Anti-Itch Cream w
    aquafor
    humidifier
    issues : constipation

    Trying to keep our wits
    What a list! You and your wife must be feeling pretty overwhelmed right now. My husband is 4 weeks post radiation and chemo. I can tell you that the Erbutux has few side effects and these are mild compared to most chemo. Benadryl and Tylenol are given prior to each infusion. The Benadryl gave my husband restless legs but that went away quickly. We switched to Biotene toothpaste for dry mouth when the regular toothpaste burned. Having a dietitian work with you is a must! Buzz had the g-tube inserted and then we were on our own. We did not get a dietitian until many weeks later. Buzz was plagued with thick mucus but most of that is gone now (it took about 3 weeks to subside). Buzz still has mouth sores and a new one just popped up. From other posts, I understand this happens for a while. To protect the teeth, Buzz was given a mouth tray which he uses with fluoride foam once a week. His mouth was too sore for about 3 weeks so he could not use it towards the end of treatment. Fatigue is a big issue. Buzz spent a lot of time in the recliner, dozing all day. I don't know why the j-tube is painful, but if your wife is vomiting and is unable to take in any fluids, she needs to see her doctor pronto. I hope I have been of help to you. God bless the two of you.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #30
    sweetblood22 said:

    Thanks for taken time to update.
    "My wife will have my head on the chopping block when she finds out about this post. She correctly demands of me to "be more modest and not arrogant in deciding in advance the horrors that will be inflicted on her!"

    I like your wife! She is stubborn and feisty like me! :) It is better to be prepared tho. Forewarned is fore armed and all that. Your list seems pretty good. I think you are prepared as much can be. Way more prepared than I was going in for sure. That's good.

    Thanks again for the update. Sorry she is having so much trouble with that j tube. Hang in there and I am always praying. Please update when you can.

    <3
    Sweets</p>

    Now Now Sweet

    Stubborn Wife’s I know all about them, I hope she don’t see this…

    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #31
    Clearblue said:

    Trying to keep our wits about us
    TNX,and apologies for my dire lack of response to your posts.
    She has had one dose of erbitux and will have the second on monday followed by her first Rad.
    Hope to get more details re dosage from the Onco by end of this week.
    In the meanwhile her j-tube is really painful and she hasnt been able to use it almost since they put it in. So the thing designed to boost has been the source of lack of nutrician. SHe has thrown up for three days most of what she eats. Dont know if its from the J-tube itself or something else. Its been like 6 weeks since we had the PET. Squamus doesnt waste time.Trying to keep our wits about us.

    Below is my basic list to keep tabs of basic care , based on your generous responses to my post. Any ideas as to how i should organize this list (or add to it) , will be appreciated.
    My wife will have my head on the chopping block when she finds out about this post. She correctly demands of me to "be more modest and not arrogant in deciding in advance the horrors that will be inflicted on her!"

    Just havent had a moment to read thro all the latest posts.

    Clear

    Date Situation Treatment throat
    breathing
    coughing
    neck (muscular)
    voice
    medications:
    mouth (sores, etc)
    saliva
    teeth
    taste
    jaw
    neck
    skin
    Eating
    solid foods
    liquids
    weight
    energy (mentally alert)
    fatigue (how tired)
    ears left
    ears right
    hrs sleep
    Emotional (up or down feeling)
    feeding tube issues
    skin creams/gels
    lab work: blood etc
    blood pressure
    MEDICAL TEAM: Name, Department, Phone Number
    radiation oncologist
    medical oncology nurse
    dietician
    pain management
    need to tell a new doctor :

    allergic reactions: medication+ reaction
    Supplies Needed:
    skin neck and chest
    mouth rinse
    toothpaste
    foam brush teeth
    gauze
    remedies
    caphosol
    biotene mouth wash
    bicarbonate sodaaveeno anti itch
    Glutamine powder- swish and swallow
    magic mouth wash
    Aveeno Maximum Strength 1% Hydrocortisone Anti-Itch Cream w
    aquafor
    humidifier
    issues : constipation

    Hi Clear

    Thanks for the up-date keep you both in prayer my friend

    Hondo
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #32
    You said:

    I want practical advice of how i am to organize myself for the comming "inquisition":
    1.What do i need to have at home on the assumtion that shell be at home , and not hospitalized at least initially?
    2. What do I need to find out/organize/take into account when I look for a small group to help me?
    3.How am i to function as the husband at the hospital on the assumption that shell be hospitalized?
    4.Any thing else you recommend or comment.

    I am not sure why you asked me, clearblue, as I am no more knowledgeable than anyone else on these boards, but I will do what I can, having not read the other responses, so there is the risk of repetition.

    I'm not sure of the inquisition you speak of, but generally, you will need an insurance card ready, maybe your co-pay card if you have one (or money) and you will need to have a handy list of your wife's meds, the dosages, and how often she takes them daily. These are given.

    Even though it may seem repetitive, after all you have been through, you may be asked to fill out forms indicating treatments your wife has had in the past. I can tell you, as a survivor, I often cannot remember what I had done and when I ask my wife she sometimes does not remember either. It DOES get busy from time to time.

    Any allegies must be documented as well.

    With respect to organization, those are good starters, but also have a notebook or some such on which you can come in with the questions that you and your wife already have, so that you do not lose them in the heat of the moment. It is, after all, an emotional time. Record the answers you get (some recommend tape recorders rather than notebooks), so that you can later talk together and come up with new questions, write them down, and bring them up at the next meeting.

    Repeat for as long as necessary.

    Ask about ALL options, what the percentages for survival are in each case, what are the chances for fatality, and what the doctor recommends. And if you don't like the doctor or if you don't trust the doctor, get one you do like and trust. That, my friend, is fundamental.


    1. At home, I would immediately recommend pre-cooked meals for both you and her. She may not be able to eat what you eat at first, so make sure to have available things that she can handle, initially, let's say, smoothies, and yogurt and pudding, while you also pre-make meals for yourself if friends are not doing it, things you can pop into the microwave or onto the stove or into the oven, with very little preparation.
    You will savor the time not spent dealing with that stuff.

    IF there is any wound care involved, ask to talk to a wound care nurse (my wife is one) for any supplies you may need to care for such wounds. I can't know what will be involved, but these folks will, and they may be able to offer freebies. If not, they can at least advise you on what you need to purchase, creams, ointments, bandage types, that sort of thing.

    If she is not coming home to a hospice situation, you may need to consider sleeping arrangements (just saying). She may not be comfortable in bed with you, to be honest. She will be dealing with her pain and her mortality and may want to sleep alone.

    If she IS coming home to hospice, she will have a gurney, most likely, and you will need to decide where to put it and where you will be coincident to it.

    REgardless of cancer, hydration is very important. OncoMan suggested to me that spritzer water is even better for hydration than regular water. I do not know if that is true, but he is a professional. Just make sure wife is hydrated, above all else.

    There is more that I am forgetting.

    2. Support is critical. If you have friends and family nearby, it is likely that they will help without you saying a word to begin with. 'We were besieged with food prior to my first trip to the OR, and family and friends even took the time to mow the lawn, trim the plants and even reorganize the shed.

    If your family and friends are a bit more near-sighted than that, you might suggest some rotary schedules from among them: can I have a meal from each of you seven every week? Can I have a ride for wife to treatments on these days when I can't be there from you five? Who will come and visit my wife on a regular basis? These seem like hard questions, but they will understand. Use your church if you have one; use any clubs you belong to; use any sports teams you coach; use your place of employement. People want to help. They just need to be asked nicely.

    3. You function in the hospital the way that you, as her husband, want to function. That part normally comes easily. If you love your wife, it is a no-brainer. You will be there for her.

    4. Tough times, my friend. Take note: to be a good caregiver, take good care of the giver. It may seem counter-intuitive, but you have to be taking care of you in order to best take care of your wife. Let her know that. She will be afraid for you to be gone, and I am not recommeneding that you go out to strip bars, but make time for yourself so that you do not become too frustrated, resentful. Do that.

    I am sure I forgot some things, but you pretty much got the whole course. Take care of yourself, show your wife love, and ride the storm.

    Take care,

    Joe
  • Clearblue
    Clearblue Member Posts: 186
    #33
    soccerfreaks said:

    You said:

    I want practical advice of how i am to organize myself for the comming "inquisition":
    1.What do i need to have at home on the assumtion that shell be at home , and not hospitalized at least initially?
    2. What do I need to find out/organize/take into account when I look for a small group to help me?
    3.How am i to function as the husband at the hospital on the assumption that shell be hospitalized?
    4.Any thing else you recommend or comment.

    I am not sure why you asked me, clearblue, as I am no more knowledgeable than anyone else on these boards, but I will do what I can, having not read the other responses, so there is the risk of repetition.

    I'm not sure of the inquisition you speak of, but generally, you will need an insurance card ready, maybe your co-pay card if you have one (or money) and you will need to have a handy list of your wife's meds, the dosages, and how often she takes them daily. These are given.

    Even though it may seem repetitive, after all you have been through, you may be asked to fill out forms indicating treatments your wife has had in the past. I can tell you, as a survivor, I often cannot remember what I had done and when I ask my wife she sometimes does not remember either. It DOES get busy from time to time.

    Any allegies must be documented as well.

    With respect to organization, those are good starters, but also have a notebook or some such on which you can come in with the questions that you and your wife already have, so that you do not lose them in the heat of the moment. It is, after all, an emotional time. Record the answers you get (some recommend tape recorders rather than notebooks), so that you can later talk together and come up with new questions, write them down, and bring them up at the next meeting.

    Repeat for as long as necessary.

    Ask about ALL options, what the percentages for survival are in each case, what are the chances for fatality, and what the doctor recommends. And if you don't like the doctor or if you don't trust the doctor, get one you do like and trust. That, my friend, is fundamental.


    1. At home, I would immediately recommend pre-cooked meals for both you and her. She may not be able to eat what you eat at first, so make sure to have available things that she can handle, initially, let's say, smoothies, and yogurt and pudding, while you also pre-make meals for yourself if friends are not doing it, things you can pop into the microwave or onto the stove or into the oven, with very little preparation.
    You will savor the time not spent dealing with that stuff.

    IF there is any wound care involved, ask to talk to a wound care nurse (my wife is one) for any supplies you may need to care for such wounds. I can't know what will be involved, but these folks will, and they may be able to offer freebies. If not, they can at least advise you on what you need to purchase, creams, ointments, bandage types, that sort of thing.

    If she is not coming home to a hospice situation, you may need to consider sleeping arrangements (just saying). She may not be comfortable in bed with you, to be honest. She will be dealing with her pain and her mortality and may want to sleep alone.

    If she IS coming home to hospice, she will have a gurney, most likely, and you will need to decide where to put it and where you will be coincident to it.

    REgardless of cancer, hydration is very important. OncoMan suggested to me that spritzer water is even better for hydration than regular water. I do not know if that is true, but he is a professional. Just make sure wife is hydrated, above all else.

    There is more that I am forgetting.

    2. Support is critical. If you have friends and family nearby, it is likely that they will help without you saying a word to begin with. 'We were besieged with food prior to my first trip to the OR, and family and friends even took the time to mow the lawn, trim the plants and even reorganize the shed.

    If your family and friends are a bit more near-sighted than that, you might suggest some rotary schedules from among them: can I have a meal from each of you seven every week? Can I have a ride for wife to treatments on these days when I can't be there from you five? Who will come and visit my wife on a regular basis? These seem like hard questions, but they will understand. Use your church if you have one; use any clubs you belong to; use any sports teams you coach; use your place of employement. People want to help. They just need to be asked nicely.

    3. You function in the hospital the way that you, as her husband, want to function. That part normally comes easily. If you love your wife, it is a no-brainer. You will be there for her.

    4. Tough times, my friend. Take note: to be a good caregiver, take good care of the giver. It may seem counter-intuitive, but you have to be taking care of you in order to best take care of your wife. Let her know that. She will be afraid for you to be gone, and I am not recommeneding that you go out to strip bars, but make time for yourself so that you do not become too frustrated, resentful. Do that.

    I am sure I forgot some things, but you pretty much got the whole course. Take care of yourself, show your wife love, and ride the storm.

    Take care,

    Joe

    tnx and update
    'we' are now 3 sessions done , 7 weeks , at 2 dosage.
    Tomorrow ill get a detail of the fields radiated.
    Take care now
    Clear
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #34
    Clearblue said:

    tnx and update
    'we' are now 3 sessions done , 7 weeks , at 2 dosage.
    Tomorrow ill get a detail of the fields radiated.
    Take care now
    Clear

    Thanks for checking in,
    Thanks for checking in, Clear. Always thinking of you guys.

    <3 D
  • Hondo
    Hondo Member Posts: 6,636 Member
    #35
    sweetblood22 said:

    Thanks for checking in,
    Thanks for checking in, Clear. Always thinking of you guys.

    <3 D</p>

    Hi Clear
    Hopping and praying all will continue to go well my friend

    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #36
    Clearblue said:

    tnx and update
    'we' are now 3 sessions done , 7 weeks , at 2 dosage.
    Tomorrow ill get a detail of the fields radiated.
    Take care now
    Clear

    Thoughts and Prayers
    Got you and your family covered on those brother....

    John
  • buzz99
    buzz99 Member Posts: 404
    #37
    Clearblue said:

    tnx and update
    'we' are now 3 sessions done , 7 weeks , at 2 dosage.
    Tomorrow ill get a detail of the fields radiated.
    Take care now
    Clear

    Clearblue
    I was wondering about you. I hope your wife is feeling better and that the jtube is working out ok. Keep us posted. We are all concerned about the two of you.
  • Clearblue
    Clearblue Member Posts: 186
    #38
    buzz99 said:

    Clearblue
    I was wondering about you. I hope your wife is feeling better and that the jtube is working out ok. Keep us posted. We are all concerned about the two of you.

    DAY 5 of RT- mouth sores
    Hi there
    Day 5 of RT now and she woke up with mouth sores on inside of lips/cheek.

    We were given nystatin-oral suspension:for oral fungal infections.
    In addition:Oralten:(10mg clotrimazol)

    Also her neck has started to get red especially on the lump on her neck.

    Clear
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #39
    Clearblue said:

    DAY 5 of RT- mouth sores
    Hi there
    Day 5 of RT now and she woke up with mouth sores on inside of lips/cheek.

    We were given nystatin-oral suspension:for oral fungal infections.
    In addition:Oralten:(10mg clotrimazol)

    Also her neck has started to get red especially on the lump on her neck.

    Clear

    I started to get red and get
    I started to get red and get some mouth sores by my 5-6 day. Also lost taste and smell then. My mouth was a mess, but I never had thrush. Just remember that it is killing any cancer cells too. Thanks for the update. One week down, hang in there.

    Sweet
  • Scambuster
    Scambuster Member Posts: 973
    #40
    Clearblue said:

    DAY 5 of RT- mouth sores
    Hi there
    Day 5 of RT now and she woke up with mouth sores on inside of lips/cheek.

    We were given nystatin-oral suspension:for oral fungal infections.
    In addition:Oralten:(10mg clotrimazol)

    Also her neck has started to get red especially on the lump on her neck.

    Clear

    L Glutamine
    Hi Clear,

    Not sure if you have this already but the L Glutamine pwd will help with mouth and throat sores and also help her keep some muscle tissue during the weight loss. Just mix a big spoon in water and swish and swallow when ever. Many of used the salt water mix as well for frequent rinsing.

    Regds
    Scam
  • Clearblue
    Clearblue Member Posts: 186
    #41
    Scambuster said:

    L Glutamine
    Hi Clear,

    Not sure if you have this already but the L Glutamine pwd will help with mouth and throat sores and also help her keep some muscle tissue during the weight loss. Just mix a big spoon in water and swish and swallow when ever. Many of used the salt water mix as well for frequent rinsing.

    Regds
    Scam

    tnx everyone
    Scam , ok i just saw your latest PH post. tnx.
    DAY 8 OF RADS DONE.
    THere have been secretions now on the neck where the tumor lump is.
    The lump seems to be protruding less, ike its smaller. I suppose only a CT is an indicator. (Yeah 8 days is pushing it a little, i know)
    Voice has gone totally raspy and also shes developed a wheezt kind of cough.
    Go well all.
    Clear.

Discussion Boards