Is it possible to get thru this without a caregiver?

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phrannie51
phrannie51 Member Posts: 4,716
or say, just a part time care giver? I remember someone on here saying she'd been alone except some help of a couple good friends. I read it in the first couple of days, but I can't find that post nor remember who it was. I'm just trying to figure out how much of this I can handle on my own...

p
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  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    it depends
    on not having complications. The first time I went through the process I had a radical neck disection and radiation. My aging parents drove me home from the hospital. Outside of that, I was completely on my own. I had no problems whatsoever. The radical neck disection didn't present any special problems. And I had the easiest path through radiation you ever heard of. No problems whatsoever. I worked every day, I ate solid food, I didn't have any pain. There was no need for help because I just simpl didn't need any. That was good for me, because I didn't have any.

    This time was harder. And I was married, so my wife was with me the entire time. However, through chemo and radiation, I drove myself each time, and certainly could have done all my own food preparation and basic self care.

    The minute problems creep in , all bets are off, but I've done it several times without problems, and without needing help. To be honest, we had a backup plan or two in place, in case circumstances warranted. But it all depends on how things go.

    Pat
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    Yes
    yes is the answer, you can do anything. i suggest you ask for help, most people do not know what to do for you and do not know when you need anything as it is hard for them to guess.

    keep in mind you can do anything when you believe, maintain a positive mental attitude, keep your faith and never never never give up.

    one last thought, do not try to do on your own if someone asks if they can do something no matter how small let them do it... it will put a smile on their face and the smile will help you smile. no one wants to feel like they can't do it but now and thru recovery is not the time to try and do by yourself.

    john
  • Roselvr
    Roselvr Member Posts: 30
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    How far is the treatment?
    My

    How far is the treatment?
    My hub is pretty healthy but he had discoid lupus; his team didn't know how that would come into play & while he went in positive; a guy like him can have problems when they actually need help or get help; they feel like they're being babied. The team did not want him driving if he was taking pain killers or ativan & at one point said he should not drive.
    He had a peg tube; also neck dissection & at some point; the neck may get sore & you can't turn your head quick enough when driving. The other thing is moving wrong with the peg; or simply being exhausted from treatment. He didn't drive for at least 4 months if not more.

    If you're going to a large center; they may have housing; or a van you can take.
  • CajunEagle
    CajunEagle Member Posts: 408
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    In short........No.
    Well, not for me. If not for my wife, neighbors, relatives, and close friends, I'm convinced that I wouldn't be typing on this keyboard at this time.

    Larry
  • phrannie51
    phrannie51 Member Posts: 4,716
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    fisrpotpe said:

    Yes
    yes is the answer, you can do anything. i suggest you ask for help, most people do not know what to do for you and do not know when you need anything as it is hard for them to guess.

    keep in mind you can do anything when you believe, maintain a positive mental attitude, keep your faith and never never never give up.

    one last thought, do not try to do on your own if someone asks if they can do something no matter how small let them do it... it will put a smile on their face and the smile will help you smile. no one wants to feel like they can't do it but now and thru recovery is not the time to try and do by yourself.

    john

    Ok then :)
    I'll put the fear of being an ultra-burden on the back burner. I have wonderful sisters, and a great husband, but they have busy lives of their own. I know I will need them during certain times, but I want them to be able to carry on as "normal" as much as possible.

    I will ask for help when I need it...I learned humbleness and reaching out during the 25 years I've been AA...I think what I learned in that organization is why I found this group so early in this new road I'm traveling. I thank God I found it, too!!

    fusroitoem..you made a very good point...to not get so lost in "doing for self", that I deprive another person the warm fuzzy of knowing they contributed to helping me. I've been on that end, and there is a deep satisfaction in knowing you've helped another and that it was appreciated.

    p
  • phrannie51
    phrannie51 Member Posts: 4,716
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    In short........No.
    Well, not for me. If not for my wife, neighbors, relatives, and close friends, I'm convinced that I wouldn't be typing on this keyboard at this time.

    Larry

    So many questions...
    I hope it's ok that many of my questions now deal with the preparing myself for the battle...I feel like I've been parachuted into the Amazon jungle...everything is alien, and I have no skills or knowledge....and hoping like he** that what I've learned in 61 years will be a decent foundation for leaning what I need to know...emotionally, spriritually...as well as physically.

    p
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    In short........No.
    Well, not for me. If not for my wife, neighbors, relatives, and close friends, I'm convinced that I wouldn't be typing on this keyboard at this time.

    Larry

    Phrannie and John
    "Cantankerous O.F.?" Me! I mean, uh, ME?! Do I pick-on poor little innocent creatures swimming in the sea, singing angelic sea songs in praise and love of the entire Universe? NO! Uh..me? How (LOL) dare you!

    Phrannie, you just do what is necessary to make it thru the tunnel, or down the rough road. As John the Fishy suggested, I went thru it pretty much alone. Weeks 2-6 I needed the help of co-workers/friends to drive me to and from tx and Walgreen's, and the Jevity people to deliver the PEG's feeding substance to my door, but that's about it. Had stocked-up on the essentials I knew I'd need, and then just fought the good fight. And, like I've said, it wasn't nearly as tough as I thought it'd be, even with the C&R regiment they put me thru. One just does what one has to do to make it thru, Phrannie, whether with or without a Caregiver to constantly be there with you to help. The question of whether or not I was gonna survive it was off the table before actual treatment started, just like it is for you, and all that remained was taking it one day at a time in stride, as we all do. If I did have a Caregiver, Phrannie, it was the man whose picture is in my Avatar- his name is **** Butkus. To all who know of Butkus- enough said.

    kcass
  • nwasen
    nwasen Member Posts: 235 Member
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    Kent Cass said:

    Phrannie and John
    "Cantankerous O.F.?" Me! I mean, uh, ME?! Do I pick-on poor little innocent creatures swimming in the sea, singing angelic sea songs in praise and love of the entire Universe? NO! Uh..me? How (LOL) dare you!

    Phrannie, you just do what is necessary to make it thru the tunnel, or down the rough road. As John the Fishy suggested, I went thru it pretty much alone. Weeks 2-6 I needed the help of co-workers/friends to drive me to and from tx and Walgreen's, and the Jevity people to deliver the PEG's feeding substance to my door, but that's about it. Had stocked-up on the essentials I knew I'd need, and then just fought the good fight. And, like I've said, it wasn't nearly as tough as I thought it'd be, even with the C&R regiment they put me thru. One just does what one has to do to make it thru, Phrannie, whether with or without a Caregiver to constantly be there with you to help. The question of whether or not I was gonna survive it was off the table before actual treatment started, just like it is for you, and all that remained was taking it one day at a time in stride, as we all do. If I did have a Caregiver, Phrannie, it was the man whose picture is in my Avatar- his name is **** Butkus. To all who know of Butkus- enough said.

    kcass

    caregivers....
    I live alone. 62 years old. lived with friends when going thru treatment and then came home all by myself. No husband, no kid around, no siblings and parents long gone.
    But I am a determined and focused person and knew to reach out to friends when I came home. I also had my nurses phone number handy at the James Hospital and did call plenty of times. I wasn't too proud to ask for help; be it meds, advice, a shoulder to lean on.
    And Kent is sure right; just take each day, live thru it and try and enjoy something of the day; whether it be rock n roll music (in my case), movies, books, a bird feeder outside your window. One foot in front of the other and this too shall pass.....
  • nwasen
    nwasen Member Posts: 235 Member
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    Kent Cass said:

    Phrannie and John
    "Cantankerous O.F.?" Me! I mean, uh, ME?! Do I pick-on poor little innocent creatures swimming in the sea, singing angelic sea songs in praise and love of the entire Universe? NO! Uh..me? How (LOL) dare you!

    Phrannie, you just do what is necessary to make it thru the tunnel, or down the rough road. As John the Fishy suggested, I went thru it pretty much alone. Weeks 2-6 I needed the help of co-workers/friends to drive me to and from tx and Walgreen's, and the Jevity people to deliver the PEG's feeding substance to my door, but that's about it. Had stocked-up on the essentials I knew I'd need, and then just fought the good fight. And, like I've said, it wasn't nearly as tough as I thought it'd be, even with the C&R regiment they put me thru. One just does what one has to do to make it thru, Phrannie, whether with or without a Caregiver to constantly be there with you to help. The question of whether or not I was gonna survive it was off the table before actual treatment started, just like it is for you, and all that remained was taking it one day at a time in stride, as we all do. If I did have a Caregiver, Phrannie, it was the man whose picture is in my Avatar- his name is **** Butkus. To all who know of Butkus- enough said.

    kcass

    caregivers....
    I live alone. 62 years old. lived with friends when going thru treatment and then came home all by myself. No husband, no kid around, no siblings and parents long gone.
    But I am a determined and focused person and knew to reach out to friends when I came home. I also had my nurses phone number handy at the James Hospital and did call plenty of times. I wasn't too proud to ask for help; be it meds, advice, a shoulder to lean on.
    And Kent is sure right; just take each day, live thru it and try and enjoy something of the day; whether it be rock n roll music (in my case), movies, books, a bird feeder outside your window. One foot in front of the other and this too shall pass.....
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    Kent Cass said:

    Phrannie and John
    "Cantankerous O.F.?" Me! I mean, uh, ME?! Do I pick-on poor little innocent creatures swimming in the sea, singing angelic sea songs in praise and love of the entire Universe? NO! Uh..me? How (LOL) dare you!

    Phrannie, you just do what is necessary to make it thru the tunnel, or down the rough road. As John the Fishy suggested, I went thru it pretty much alone. Weeks 2-6 I needed the help of co-workers/friends to drive me to and from tx and Walgreen's, and the Jevity people to deliver the PEG's feeding substance to my door, but that's about it. Had stocked-up on the essentials I knew I'd need, and then just fought the good fight. And, like I've said, it wasn't nearly as tough as I thought it'd be, even with the C&R regiment they put me thru. One just does what one has to do to make it thru, Phrannie, whether with or without a Caregiver to constantly be there with you to help. The question of whether or not I was gonna survive it was off the table before actual treatment started, just like it is for you, and all that remained was taking it one day at a time in stride, as we all do. If I did have a Caregiver, Phrannie, it was the man whose picture is in my Avatar- his name is **** Butkus. To all who know of Butkus- enough said.

    kcass

    Butkus:
    Hi Kent, just letting you know that I drink at a Tikki Bar at the ocean in Pompano beach, FL. ( well I don't
    drink anymore) but I still make it down there every Sunday to charge the batteries , so to speak.. The point of this is that I drink (drank) with a big burley bulldog looking guy which happens to be DIESEL BUTKUS which is **** Butkus's Brother. He's at the Tikki Bar three times a week , but this week he's in Vegas so it will be next week till I see him again. I just though you would get a kick out it.

    As for Phrannie you have all the caregivers you need on this board the help you to the finish line and beyond. The people here are wonderful and will keep your spirits up while you go through this little bump in your life. (The man upstairs does an awesome job of helping as-well).

    God Bless,
    Tonsil Dad
    Dan.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Kent Cass said:

    Phrannie and John
    "Cantankerous O.F.?" Me! I mean, uh, ME?! Do I pick-on poor little innocent creatures swimming in the sea, singing angelic sea songs in praise and love of the entire Universe? NO! Uh..me? How (LOL) dare you!

    Phrannie, you just do what is necessary to make it thru the tunnel, or down the rough road. As John the Fishy suggested, I went thru it pretty much alone. Weeks 2-6 I needed the help of co-workers/friends to drive me to and from tx and Walgreen's, and the Jevity people to deliver the PEG's feeding substance to my door, but that's about it. Had stocked-up on the essentials I knew I'd need, and then just fought the good fight. And, like I've said, it wasn't nearly as tough as I thought it'd be, even with the C&R regiment they put me thru. One just does what one has to do to make it thru, Phrannie, whether with or without a Caregiver to constantly be there with you to help. The question of whether or not I was gonna survive it was off the table before actual treatment started, just like it is for you, and all that remained was taking it one day at a time in stride, as we all do. If I did have a Caregiver, Phrannie, it was the man whose picture is in my Avatar- his name is **** Butkus. To all who know of Butkus- enough said.

    kcass

    that is funny
    I'm a little slow on the uptake some times. I've been looking at this picture for awhile, thinking to myslef, "this guy looks like **** Butkus." Then sometime bacck you posted that you weighed something like 132 lbs, and I thought, "this guy doesn't look like he weighs 132#, helooks like he could chew nails."

    Doooohhhhhhhhhh.......
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    Ok then :)
    I'll put the fear of being an ultra-burden on the back burner. I have wonderful sisters, and a great husband, but they have busy lives of their own. I know I will need them during certain times, but I want them to be able to carry on as "normal" as much as possible.

    I will ask for help when I need it...I learned humbleness and reaching out during the 25 years I've been AA...I think what I learned in that organization is why I found this group so early in this new road I'm traveling. I thank God I found it, too!!

    fusroitoem..you made a very good point...to not get so lost in "doing for self", that I deprive another person the warm fuzzy of knowing they contributed to helping me. I've been on that end, and there is a deep satisfaction in knowing you've helped another and that it was appreciated.

    p

    ok
    i know this is going to sound selfish but once the treatments get going there probably come a point where you need to be very selfish and everything becomes about you and your fight. Only you can win the war and all those caregivers help you with the daily battles.

    john
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    that is funny
    I'm a little slow on the uptake some times. I've been looking at this picture for awhile, thinking to myslef, "this guy looks like **** Butkus." Then sometime bacck you posted that you weighed something like 132 lbs, and I thought, "this guy doesn't look like he weighs 132#, helooks like he could chew nails."

    Doooohhhhhhhhhh.......

    Nails
    He couldn't get nails through his tube, maybe carpet tacks.....LOL
  • hislove40
    hislove40 Member Posts: 51
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    I think everyone is different Phrannie
    Phrannie -
    My battle doesn't seem nearly as intense as many of you, and I really don't know where all of this is taking me. I live with several dogs and a couple cats - my 3 kids are grown with 1st grandbaby on the way but all 3 live in other states a long way away. My parents are both livingbut a long way away and 2 of my siblings live a flight away :). I work full time and have one great brother and his family very close along with lots of great friends. The cancer center is 45 minutes from home and 20 away from work. I had the surgeries with no help other than a ride home from my SIL after biopsy in my lymph node because of anesthesia.

    Now a funny thing about being stubborn and die hard independent is you sometimes don't know when to ask for help or make excuses for the people that would love to help you. I got WAY overcharged on the day of my biopsy paying a taxi driver because I didn't want to impose for a ride there and home and I plowed into the back of someone on the highway one night after treatment just being too tired and doing too much. I was just daydreaming and everyone is okay - everyone's cars fixed etc.

    My biggest concern is my several foster dogs of which all but 1 are not really adoptable. They are a lot of work and totally depend on me. My organization along with any other in TX is way beyond packed so trying to move dogs to another home would be very difficult but could happen. My director is aware of the situation and asks me all the time how I'm doing. My petsitter is a great friend who has keys to the house and with the help of others could come in and take care of them all I would think for a while. My closest friend is also an OR nurse that I've turned down repeatedly for help. My circle of friends are mostly rescue people - that's just how it works out :)

    My biggest advice would just to be aware and ready to let people step in when need be for whatever you have going on at the time :)
  • nwasen
    nwasen Member Posts: 235 Member
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    hislove40 said:

    I think everyone is different Phrannie
    Phrannie -
    My battle doesn't seem nearly as intense as many of you, and I really don't know where all of this is taking me. I live with several dogs and a couple cats - my 3 kids are grown with 1st grandbaby on the way but all 3 live in other states a long way away. My parents are both livingbut a long way away and 2 of my siblings live a flight away :). I work full time and have one great brother and his family very close along with lots of great friends. The cancer center is 45 minutes from home and 20 away from work. I had the surgeries with no help other than a ride home from my SIL after biopsy in my lymph node because of anesthesia.

    Now a funny thing about being stubborn and die hard independent is you sometimes don't know when to ask for help or make excuses for the people that would love to help you. I got WAY overcharged on the day of my biopsy paying a taxi driver because I didn't want to impose for a ride there and home and I plowed into the back of someone on the highway one night after treatment just being too tired and doing too much. I was just daydreaming and everyone is okay - everyone's cars fixed etc.

    My biggest concern is my several foster dogs of which all but 1 are not really adoptable. They are a lot of work and totally depend on me. My organization along with any other in TX is way beyond packed so trying to move dogs to another home would be very difficult but could happen. My director is aware of the situation and asks me all the time how I'm doing. My petsitter is a great friend who has keys to the house and with the help of others could come in and take care of them all I would think for a while. My closest friend is also an OR nurse that I've turned down repeatedly for help. My circle of friends are mostly rescue people - that's just how it works out :)

    My biggest advice would just to be aware and ready to let people step in when need be for whatever you have going on at the time :)

    Let people in
    I hear you hislove40. As a spoiled only child of the 60's I am hardheaded and used to doing things my way. I did learn to be humble and ask for help and boy you sure get hit with how great people are. I had people I wasn't even really friends with step up and help and my good friends became like family.
    Being aware is the key. Don't try and do too much or you will wear yourself out. I was fortunate to be able to "pamper" myself and heal/. Laundry, dishes, housecleaning...all got done by others until I built back my strength. I went back to work after 12 weeks and worked 6 and a half hours a day for a month and then it was back to the 8 hours. It was great to have help so that I could come home and crash for a few months after work.
    Pace yourself and you will feel better.......listen to your body is the key.
    BTW love that you foster rescues...
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    So many questions...
    I hope it's ok that many of my questions now deal with the preparing myself for the battle...I feel like I've been parachuted into the Amazon jungle...everything is alien, and I have no skills or knowledge....and hoping like he** that what I've learned in 61 years will be a decent foundation for leaning what I need to know...emotionally, spriritually...as well as physically.

    p

    Treatment Education
    The treatment and just learning about cancer is an entire education....

    Some of it's learning on the fly, a lot can be expressed and communicated by those that have gone before you.

    But each being different, it's really hard to say how well you'll do until confronted.

    For me, it was fairly easy and a lot less eventful than anticipated (knock on wood)... For others it has been a real struggle.

    But, having the knowledge base here I believe is definitely an unbeatable asset.

    JG
  • Hal61
    Hal61 Member Posts: 655
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    Yes
    Hi Phrannie, it sounds like you have a husband and relatives, so I imagine they will be happy to help when those times come up.

    If it took a support group, friends, and family to make it, I'd be dead. My friends had all left town or died by the time I got SCC. I had a lady friend that went to a few dr. visits with me. She lived in a nearby town. My ex took me once to the hospital, when I became dehydrated.

    I drove myself to every rad and chemo session. My lady friend took me home from the hospital the day I left from neck dissection, then returned to her own home.

    If you can't find someone to drive you on those occasions when you can't, the ACS can arrange rides for you from volunteers, you just have to call the local office and make a set a time. There is in-home care if you get too sick, and there are ambulances and cabs.

    I shoped, fixed my peg meals, and did whatever I had to do. I went to the bank one day, and got sick. They only have an employee bathroom, so I was led, bald and puking through the tellers area to the back where the bank workers bathroom was.

    The idea that you can't make it without friends, family, and support is not true. I wouldn't want anyone lurking out there who genuinely has no support to feel they "can't make it." You have to want to live, and find and use the resources available to those who don't have support near. It sounds like you do, and I sure they will pitch in.

    best, Hal
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    Hal61 said:

    Yes
    Hi Phrannie, it sounds like you have a husband and relatives, so I imagine they will be happy to help when those times come up.

    If it took a support group, friends, and family to make it, I'd be dead. My friends had all left town or died by the time I got SCC. I had a lady friend that went to a few dr. visits with me. She lived in a nearby town. My ex took me once to the hospital, when I became dehydrated.

    I drove myself to every rad and chemo session. My lady friend took me home from the hospital the day I left from neck dissection, then returned to her own home.

    If you can't find someone to drive you on those occasions when you can't, the ACS can arrange rides for you from volunteers, you just have to call the local office and make a set a time. There is in-home care if you get too sick, and there are ambulances and cabs.

    I shoped, fixed my peg meals, and did whatever I had to do. I went to the bank one day, and got sick. They only have an employee bathroom, so I was led, bald and puking through the tellers area to the back where the bank workers bathroom was.

    The idea that you can't make it without friends, family, and support is not true. I wouldn't want anyone lurking out there who genuinely has no support to feel they "can't make it." You have to want to live, and find and use the resources available to those who don't have support near. It sounds like you do, and I sure they will pitch in.

    best, Hal

    Hal
    very nicely stated

    john
  • pattyanny
    pattyanny Member Posts: 544
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    Yes you can!
    I drove both to and from chemo and radiations. I WAS married, but looking back, really went through it alone. I am thankful my ex was there to feed my children, but he had to eat anyway, so no biggie there! I am most grateful to my Sister who would drive 2 hours to check in on me. I really was only drinking fluids, and lying in bed until appointment times. If I can do it, you can! Especially if you have friends close by to help out. My prayers are with you. Stay positive, listen to your body, and Believe! Wishing you the best!
    Patty
  • phrannie51
    phrannie51 Member Posts: 4,716
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    pattyanny said:

    Yes you can!
    I drove both to and from chemo and radiations. I WAS married, but looking back, really went through it alone. I am thankful my ex was there to feed my children, but he had to eat anyway, so no biggie there! I am most grateful to my Sister who would drive 2 hours to check in on me. I really was only drinking fluids, and lying in bed until appointment times. If I can do it, you can! Especially if you have friends close by to help out. My prayers are with you. Stay positive, listen to your body, and Believe! Wishing you the best!
    Patty

    I'm encouraged....
    Thank you everyone for your imput. Like in everything else, there has to be a balance...knowing when to ask for help and being gracious in accepting help...but it's encouraging to hear everyone's experience...knocking on wood that I can follow in many of your footsteps...

    p