Where are you?

MichelleP
MichelleP Member Posts: 254
edited March 2014 in Caregivers #1
I've been on this board for a couple of months now. I'm a full time caregiver for my husband with stage IIIB adenocarcinoma. He is unable to do much of anything for himself and my life consists of caring for him at home ( I can't leave him at anytime) , traveling to doctors, going to hospitals for either ER or transfusions etc. I read so much about how important it is for the caregiver to take care of themselves, but how do you do this when you're new to the city you live in and don't know anyone? I even contacted the church as well as community organizations thinking that maybe a telephone buddy would help, but even they don't reply....and then I come to this board and wonder "why does the caregiver section have so little activity"? Where is everyone? Am I just one of the few who are alone in the world? Do the rest have family, friends and loved ones surrounding them? My heart is just bursting with emotion at the realization that there is truly no one there for me...for us.
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Comments

  • glasus
    glasus Member Posts: 34
    #2
    everyone
    i cant speak for eveyone, if you can tell us "me"where you are, i am sure there is someone from this chatroom who lives there. I truly don't belive you are alone, cause there is a local acs wherever we go. i am sorry to say we tried working with local churches also. no help. I truly beleive ACS is the onloy way to, get your old navigator a call tell them where you are and hook up. You are not alone let us know we wiil help.
  • terato
    terato Member Posts: 375
    #3
    Hey, I'm here!
    Michelle,

    I'm the last surviving member of my family, and I'm the one who had cancer! The only reason I am able to visit this board now is that I don't go back to work until late August. Many of the "regulars" are working or have other obligations, limiting their on-line time. That being said, "we" are all here for you. For more immediate help, you might try CancerCare's telephone support via: http://www.cancercare.org/get_help/telephone.php.

    "We" are here, but sometimes it takes a little longer for return visits.

    Love and Courage!

    Rick
  • SonSon
    SonSon Member Posts: 174
    #4
    Where am I
    Yes - I am fairly new to this board, also, and that question occurred to me as well. I noticed relatively little activity.
    Where am I??? Working all day (from home - but still consumes time and energy), caring for sick mother-in-law which includes help getting around the house, bathroom calls, kitchen duty, maid duty, taxi duty, nursing assistant duty, medicine and glucose test duty.... and by the time all the demands stop (they never do...I just catch a few minutes between them) I am so danged tired it is really hard for me to focus my mind on the computer.
    I, too, am very alone in my care of my mother-in-law. Hubby travels for business 2-3 weeks and comes home only for a few days, maybe 5 days at a time. I too am in a city that we moved to recently and I don't have any connections. I tried to get someone from my religious community to help me, even paying them, but they did not have transportation and began expecting me to give them rides. I don't need to take care of two people, thank you.
    I ask myself - "where am I?" - it sometimes seems that I have ceased to exist.
    Sooo...I am here....when I have the time and energy.
  • Tonia11
    Tonia11 Member Posts: 57
    #5
    SonSon said:

    Where am I
    Yes - I am fairly new to this board, also, and that question occurred to me as well. I noticed relatively little activity.
    Where am I??? Working all day (from home - but still consumes time and energy), caring for sick mother-in-law which includes help getting around the house, bathroom calls, kitchen duty, maid duty, taxi duty, nursing assistant duty, medicine and glucose test duty.... and by the time all the demands stop (they never do...I just catch a few minutes between them) I am so danged tired it is really hard for me to focus my mind on the computer.
    I, too, am very alone in my care of my mother-in-law. Hubby travels for business 2-3 weeks and comes home only for a few days, maybe 5 days at a time. I too am in a city that we moved to recently and I don't have any connections. I tried to get someone from my religious community to help me, even paying them, but they did not have transportation and began expecting me to give them rides. I don't need to take care of two people, thank you.
    I ask myself - "where am I?" - it sometimes seems that I have ceased to exist.
    Sooo...I am here....when I have the time and energy.

    I'm here
    I'm here too. I'm fairly new, at least to this board. My husband has stomach cancer so I usually post to that board. I do look at this board just about daily but I rarely post. But I'm here and I'll try to post more often.
  • MichelleP
    MichelleP Member Posts: 254
    #6
    glasus said:

    everyone
    i cant speak for eveyone, if you can tell us "me"where you are, i am sure there is someone from this chatroom who lives there. I truly don't belive you are alone, cause there is a local acs wherever we go. i am sorry to say we tried working with local churches also. no help. I truly beleive ACS is the onloy way to, get your old navigator a call tell them where you are and hook up. You are not alone let us know we wiil help.

    Glausus
    I also called the ACS for some kind of support....anything. That was in May 2009....they said someone would contact me. Nothing...then in June I called again...same reply....still waiting.
  • glasus
    glasus Member Posts: 34
    #7
    MichelleP said:

    Glausus
    I also called the ACS for some kind of support....anything. That was in May 2009....they said someone would contact me. Nothing...then in June I called again...same reply....still waiting.

    support
    What city are you in? At the very least your onc social worker should be able to help. I'm sorry if you could be more specific what your needs are, i would help.
  • MichelleP
    MichelleP Member Posts: 254
    #8
    glasus said:

    support
    What city are you in? At the very least your onc social worker should be able to help. I'm sorry if you could be more specific what your needs are, i would help.

    Glasus
    We live in the high desert in CA...a town called Apple Valley. Someone had previously mentioned a social worker to me and suggested I ask at the onc office for one. Well, they don't have social workers there.
  • jimbeam50
    jimbeam50 Member Posts: 47
    #9
    Tonia11 said:

    I'm here
    I'm here too. I'm fairly new, at least to this board. My husband has stomach cancer so I usually post to that board. I do look at this board just about daily but I rarely post. But I'm here and I'll try to post more often.

    I'm here too!
    Honestly I don't come to this site often, I am mostly at the prostate cancer site. My husband has advance cancer and I am his full time caregiver. I feel like I am a total wreck but I do not want to burden my friends and family with my problems. I am handling my husband illnes pretty well, he said I am keeping him alive, but I am more worried about what will happen when I am alone some day. Caregiving is hard, I am in pain when he is in pain and I cry when he cries. The caregiver has to be the strong one but you need support for the times when you can not be. Unload your worries when you need to, you are among understanding friends. I'll be checking up on you. Sheila
  • donnare
    donnare Member Posts: 266
    #10
    I'm here too
    Hi,

    My husband has colon cancer with over 11 mets to liver. Dx 5/28/09. He will have his second chemo treatment this coming Monday. I usually post to the colorectal site trying to get info, etc., but also read here. You are not alone Michelle. I do have lots of family and friends around, but often feel alone also. No matter how hard they try, they will never understand. I don't think I would have either. Cancer changes everything and only those going through it truly understand - and that applies to the caregivers also.

    I'm sorry everything is so hard for you right now Michelle. As I said, you are not alone. I'll look for your posts. Feel free to PM me if you would like to talk that way too.

    Take care and hugs to you,
    Donna
  • sue Siwek
    sue Siwek Member Posts: 279
    #11
    where are we
    if your church is non responsive try another. also, there are support groups through the hospital or treatment center that your husband is going to. join in! it is hard at first but i am sure from the first visit you will be on your way. also, if you do not have a doctor for yourself get one, they will be a tremendous help. it is overwhelming i know, i have been dealing with a husband with cancer and parkinsons for nearly 10 years! you need to take care of yourself as well as him. there is help and others who know what you are going through. get up and get going! you can do this and will learn so much about yourself. you will see that you are strong! you will learn skills that you never knew you had and will be better for it.
  • MichelleP
    MichelleP Member Posts: 254
    #12
    sue Siwek said:

    where are we
    if your church is non responsive try another. also, there are support groups through the hospital or treatment center that your husband is going to. join in! it is hard at first but i am sure from the first visit you will be on your way. also, if you do not have a doctor for yourself get one, they will be a tremendous help. it is overwhelming i know, i have been dealing with a husband with cancer and parkinsons for nearly 10 years! you need to take care of yourself as well as him. there is help and others who know what you are going through. get up and get going! you can do this and will learn so much about yourself. you will see that you are strong! you will learn skills that you never knew you had and will be better for it.

    I've already tried to find
    I've already tried to find help thru the hospital and the onc doc. There isn't anything available up here. Even if there were I can't leave the home and leave my husband alone. I've left messages with the acs here (which is about 50 miles away) and they have never called me back. I've seen people from different churches that come to the door and ask for maybe a phone buddy or a visit...nothing. To be honest I have finally accepted the fact that my hubby and I are on this journey "alone". I refuse to cry one more tear in the hopes of finding someone who cares. It's just the two of us...and ya know what? As long as I can walk into the room and see those beautiful blue eyes smile at me....I don't need anyone else. I may be exhausted from lack of sleep and doing everything for him which includes meds four times a day, all meals served in his bed, bathing him, cutting his hair and nails, taking him to chemo (which is really hard with the wheelchair) not to mention 12 hr days twice a week in ER for transfusions.....It's okay. But I do know one thing...when and if the day comes when I lose him, I intend to follow as soon as I can. I've made peace with that decision.
  • jimbeam50
    jimbeam50 Member Posts: 47
    #13
    MichelleP said:

    I've already tried to find
    I've already tried to find help thru the hospital and the onc doc. There isn't anything available up here. Even if there were I can't leave the home and leave my husband alone. I've left messages with the acs here (which is about 50 miles away) and they have never called me back. I've seen people from different churches that come to the door and ask for maybe a phone buddy or a visit...nothing. To be honest I have finally accepted the fact that my hubby and I are on this journey "alone". I refuse to cry one more tear in the hopes of finding someone who cares. It's just the two of us...and ya know what? As long as I can walk into the room and see those beautiful blue eyes smile at me....I don't need anyone else. I may be exhausted from lack of sleep and doing everything for him which includes meds four times a day, all meals served in his bed, bathing him, cutting his hair and nails, taking him to chemo (which is really hard with the wheelchair) not to mention 12 hr days twice a week in ER for transfusions.....It's okay. But I do know one thing...when and if the day comes when I lose him, I intend to follow as soon as I can. I've made peace with that decision.

    MichelleP,
    Do you go to St.
    MichelleP,

    Do you go to St. Mary's Medical Center for your husband's medical care? Sheila
  • MichelleP
    MichelleP Member Posts: 254
    #14
    jimbeam50 said:

    MichelleP,
    Do you go to St.
    MichelleP,

    Do you go to St. Mary's Medical Center for your husband's medical care? Sheila

    Sheila
    Yes, we go to St. Mary's. Are you familiar with them? It's a wonderful hospital and they really treat my husband very well there.
  • kimby
    kimby Member Posts: 797
    #15
    Telephone Buddy
    I know of 2 places that have phone buddies that are wonderful! Try theese:

    http://www.ccalliance.org/notalone_buddy.html

    www.imermanangels.org

    Kimby
  • jimbeam50
    jimbeam50 Member Posts: 47
    #16
    kimby said:

    Telephone Buddy
    I know of 2 places that have phone buddies that are wonderful! Try theese:

    http://www.ccalliance.org/notalone_buddy.html

    www.imermanangels.org

    Kimby

    St. Mary's Medical Center
    No I am not familiar with St. Mary's but I googled cancer center Apple Valley and that one popped up first. Have you ever checked out their web site www.stmaryapplevalley.com? I went to it and clicked on patient and visitor information services and they have a whole list of patient services available one being medical social worker. If you haven't checked it out it may be a good place to start. Sheila
  • Barbara F
    Barbara F Member Posts: 4
    #17
    Tonia11 said:

    I'm here
    I'm here too. I'm fairly new, at least to this board. My husband has stomach cancer so I usually post to that board. I do look at this board just about daily but I rarely post. But I'm here and I'll try to post more often.

    stomach cancer
    Hello,
    I am new to this board and just need someone to talk to. My husband was diagnosed with adeno carcinoma,it is in his lungs, and lymph nodes this was on June 18.Our anniversary was June 20.Married 45 years. Life was beautiful before that. We have been retired for five years and were enjoying our retirement. He complained of a stomach ache in March and didn't want to go to the doctor until it got unbearable.
    He has lost about 25 pounds since then, but is now bloated and has a false weight of 190.
    I can't get any upfront prognoses and need to know if he is suffering through this chemo and medications for nothing. He was a very strong and vibrant man, now he just sits around with no energy. It is so sad to see him like this. Does he have a chance to get into remission?
  • Sue Johnson
    Sue Johnson Member Posts: 1
    #18
    MichelleP said:

    Sheila
    Yes, we go to St. Mary's. Are you familiar with them? It's a wonderful hospital and they really treat my husband very well there.

    Care Giving
    I know how you feel. I feel the same way sometimes. My son has Melanoma and is taking a lot of narcotics for pain and is on chemo as well. He has been battling cancer for 7 years and has been on several studies. He had about 11 surgeries the last being 6 weeks ago to do bypass so he can eat. he has an obstruction in his intestine because there is a tumor on his pancreas that is going into his stomach. he is a fighter and now he is suffering with extreme pain. The melanoma starated on his left thigh in mole form. it was excised and no clear margins were found so everyting went to ell from there. he now has a tumor on the left thigh that is about the size of a baseball and it is a vascular tumor. I cannot tell you where he is in his stage because I have never been down this road. I do know if he sleeps through and misses his meds he suffers tremendously. he is on Diladid ,oxycodone,oxycotin,anxiety meds. He is not throwing up any more since the surgery to bypass his intestines and now his liver is working right too. He has a billiary obstrucion as well. the melanomas were not removed just had to bypass for a better quality of life.
    I have cared for him pretty much by myself and aslo care for his 11 and 12 year old children because his wife is an angry mean person who would not take care of the kids or my son. I fully understand the full plate and how easy it is to put myself last. i too wish there was more to be done. My son has to have bandages changed at least 3 times a day, food changed bedding sometimes a couple timesa day depending on his leg draining.Everyone always says they will help but do not show up. I know you will get through this the bigger picture is tat you know that you are doing the best you can and will always be able to say you were there. Good luck
  • mrsgeb
    mrsgeb Member Posts: 32
    #19
    I just noticed
    Hi Michelle,

    I just noticed that our husbands have the same cancer - adenocarcinoma - Gary's is stage IV of Unknown Primary with mets to bone and liver....this is the first time I have encountered anyone else with this cancer. His bone mets started in his left hip and has spread to his right hip and both legs. He can't walk at all and has to have assistance transferring from his bed to his wheelchair, that is when he feels well enough to sit up for a little while (makes it easier to change the linens!)

    When was your husband diagnosed If I may ask?

    Sherry
  • MichelleP
    MichelleP Member Posts: 254
    #20
    mrsgeb said:

    I just noticed
    Hi Michelle,

    I just noticed that our husbands have the same cancer - adenocarcinoma - Gary's is stage IV of Unknown Primary with mets to bone and liver....this is the first time I have encountered anyone else with this cancer. His bone mets started in his left hip and has spread to his right hip and both legs. He can't walk at all and has to have assistance transferring from his bed to his wheelchair, that is when he feels well enough to sit up for a little while (makes it easier to change the linens!)

    When was your husband diagnosed If I may ask?

    Sherry

    Sherry
    My husband was diagnosed in March 2009. He had no symptoms at all...just developed a little cough that seemed to linger so he went to the doctor. It was diagnosed stage IV. The hardest part on him was the pneumonia....he was in the hospital 6 times with it since March. His body couldn't take it anymore. Even the cancer had shown improvement on his latest ct scan.
  • mrsgeb
    mrsgeb Member Posts: 32
    #21
    MichelleP said:

    Sherry
    My husband was diagnosed in March 2009. He had no symptoms at all...just developed a little cough that seemed to linger so he went to the doctor. It was diagnosed stage IV. The hardest part on him was the pneumonia....he was in the hospital 6 times with it since March. His body couldn't take it anymore. Even the cancer had shown improvement on his latest ct scan.

    Michelle,
    My husband’s
    Michelle,

    My husband’s symptom was a painful hip that went on for weeks. We are fortunate that he has only been hospitalized twice.
    You said his latest scan shows some improvement? What treatments has he received?

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