The newest addition to my role....

twiceblessed
twiceblessed Member Posts: 13
edited October 2012 in Caregivers #1
Hello everyone. My name is Angie. My husband and I have been married for 15.5 years. We have faced many hardships throughout our marriage but October 5th brought the toughest battle yet. My wonderful husband was diagnosed with cancer. Honestly, I wasn't surprised. When his newest doctor found his white blood count to be super high and saw "concerning" things in his CT scan I had a feeling we would be getting hard news. I wasn't expecting it to be as hard as it was. On Tuesday the 9th we went to our first meeting with the second Oncologist (long story. If anyone wants to know the whole back story I'll post it later. Needless to say 1st Oncologist told my husband that he was fine and just looking for pain meds). It was at this meeting on the 16th that we found out John (my husband) has Stage 4 Adenocarcinoma of unknown origin which has spread to his Lymph Nodes and his adrenal glands. The Oncologist has scheduled a multitude of tests to try and find the origin, and tomorrow is round 1--Colonoscopy and Endoscopy. Well maybe not the Colonoscopy considering John hasn't been able to hold down the Colyte. I am terrified that I am not going to be the caregiver he needs. Will he see my worry as being babyish, will he understand why I'm pushing him to eat, take his meds, exercise, get all these tests done the longer he is fighting this fight. Will I be a real help to him or will I make things worse? Should I cry in front of him, or hold it in until I'm alone? Do I bring up conversations about cancer or wait for him to do it? Will I know what to say and when to say it? And not only am I his caregiver, but also the caregiver to our two girls (Krystina--12 years and Emilee--5 years). How in the world am I supposed to help them understand and deal with this? So many questions and worry and not a darn answer in sight. I wouldn't want to be anywhere else other than right here by his side helping him fight this fight. But dang if I'm not terrified I'm gonna cause more harm than good.

Comments

  • nempark
    nempark Member Posts: 681
    Just be yourself!!!!!!
    Hi Sweetie: Just be yourself----cry with him---talk to him--cry without him---. My daughter was dx with cancer and throw my entire family into instant "SHOCK" my daughter and I cried and cried and cried until we said to each other "okay, this is it, let face this journey" everyone else gets sick, why not us? Some time or the other every one of us will face sickness, but when it hits we do not know what to do. Somehow God gives us power beyond what is normal to endure and to continue living. Stop beating yourself up and take one day at a time. Do not start fighting with the what ifs, and all the crazy negative thinking, which I know is really normal. You have to be there for your two daughters. Your husband will soon learn that he has to do what is best for his survival and will assist you in order that things gets done. You will be amazed how much our human minds can endure and how strong you will be beside your loved one. As scary as this may sound, I spoke to my daughter about her will and took her to a lawyer to fill out her papers, it is simply being prepared. Do your best to get your husband to do a will and prepare him JUST IN CASE. Sorry but this is being realistic and proactive. I wish you all the best and I send you much comfort in this time of your life. Be well friend and stop being so hard on yourself. By the way, I would write a letter to the hospital about the Onc who told your husband that he was just looking for pain meds. Please keep in touch.
  • twiceblessed
    twiceblessed Member Posts: 13
    nempark said:

    Just be yourself!!!!!!
    Hi Sweetie: Just be yourself----cry with him---talk to him--cry without him---. My daughter was dx with cancer and throw my entire family into instant "SHOCK" my daughter and I cried and cried and cried until we said to each other "okay, this is it, let face this journey" everyone else gets sick, why not us? Some time or the other every one of us will face sickness, but when it hits we do not know what to do. Somehow God gives us power beyond what is normal to endure and to continue living. Stop beating yourself up and take one day at a time. Do not start fighting with the what ifs, and all the crazy negative thinking, which I know is really normal. You have to be there for your two daughters. Your husband will soon learn that he has to do what is best for his survival and will assist you in order that things gets done. You will be amazed how much our human minds can endure and how strong you will be beside your loved one. As scary as this may sound, I spoke to my daughter about her will and took her to a lawyer to fill out her papers, it is simply being prepared. Do your best to get your husband to do a will and prepare him JUST IN CASE. Sorry but this is being realistic and proactive. I wish you all the best and I send you much comfort in this time of your life. Be well friend and stop being so hard on yourself. By the way, I would write a letter to the hospital about the Onc who told your husband that he was just looking for pain meds. Please keep in touch.

    Thank you
    Thanks for your words of encouragement. We actually have his will already done--we did that for each of us when my mom suffered her first heart attack last year. We are both still young (both of us are 35, he turns 36 in two weeks), but her brush really got us thinking. So we went ahead and got it drawn up for each of us. I have been in so much shock since the Stage 4 diagnosis that I hadn't even thought about what to do about the first Oncologist. I can tell you that a big part of me just wants to go up there waving John's results and say "see he told you there was something wrong". I'll stick to your letter idea though--it's probably safer and I know it will keep me out of jail :)

    I'm very glad that I found this board.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    Shock and Coping
    My husband's first two colonoscopies didn't find his cancer. After his surgery following the third colonoscopy, we were told that he was stage 4 with mets to the lymph nodes and liver. Treatable, not curable, and life shortening. What a shock. Although he was older than your husband, the punch was just as hard. You are now facing your greatest fear, and it is really scary. When faced with this many of us have the same concerns and worries. We question ourselves and our ability to cope. All I can tell you is that somehow I did find my way. Sometimes we cried together. Sometimes I cried alone. I did have to ask the hard questions about carrying on alone but not until we had moved further along on my husband's cancer journey. We learned to take things one day, one hour, or even one minute at a time. We learned to cherish the good times and just hang on through some of the difficult times. My greatest fear happened and I lost my husband three years ago this month. Since that time, new treatments for a lot of types of cancer have come through. For my husband, it was just a matter of buying time. Through treatment, he bought six years. I hope your husband will buy many more years and see your daughters grow to adulthood and beyond. Our sons were adults and served as part of our support system.

    Some other thoughts: First, remember that you do not have to go through this alone. Being the caregiver is tough, so get help. Find a support group if you can and come here for support and to vent when you need to do so, and believe me venting sometimes becomes necessary. Check with your local American Cancer Society to see what is available. Talk to counselors at your daughters' school if they have them. They might be able to help decide what you might want to tell the girls and how. Reach out to friends and family. You will quickly figure out who is there for you. All too often we try to be the strong one, the one who doesn't need help. It's fine to be strong, and you will probably find you have more strength than you knew, but don't try to be too strong. Take care of yourself, too. Probably my most difficult suggestion, but if you don't care for yourself, you can't care for others. You will find your way. Cyber hugs, Fay
  • twiceblessed
    twiceblessed Member Posts: 13

    Shock and Coping
    My husband's first two colonoscopies didn't find his cancer. After his surgery following the third colonoscopy, we were told that he was stage 4 with mets to the lymph nodes and liver. Treatable, not curable, and life shortening. What a shock. Although he was older than your husband, the punch was just as hard. You are now facing your greatest fear, and it is really scary. When faced with this many of us have the same concerns and worries. We question ourselves and our ability to cope. All I can tell you is that somehow I did find my way. Sometimes we cried together. Sometimes I cried alone. I did have to ask the hard questions about carrying on alone but not until we had moved further along on my husband's cancer journey. We learned to take things one day, one hour, or even one minute at a time. We learned to cherish the good times and just hang on through some of the difficult times. My greatest fear happened and I lost my husband three years ago this month. Since that time, new treatments for a lot of types of cancer have come through. For my husband, it was just a matter of buying time. Through treatment, he bought six years. I hope your husband will buy many more years and see your daughters grow to adulthood and beyond. Our sons were adults and served as part of our support system.

    Some other thoughts: First, remember that you do not have to go through this alone. Being the caregiver is tough, so get help. Find a support group if you can and come here for support and to vent when you need to do so, and believe me venting sometimes becomes necessary. Check with your local American Cancer Society to see what is available. Talk to counselors at your daughters' school if they have them. They might be able to help decide what you might want to tell the girls and how. Reach out to friends and family. You will quickly figure out who is there for you. All too often we try to be the strong one, the one who doesn't need help. It's fine to be strong, and you will probably find you have more strength than you knew, but don't try to be too strong. Take care of yourself, too. Probably my most difficult suggestion, but if you don't care for yourself, you can't care for others. You will find your way. Cyber hugs, Fay

    Thank you for replying
    Thank you for replying grandmafay. I have an appointment scheduled with the girls school counselor and principal on Friday. I know that I can't do all this on my own, I know that I need help to make sure everything gets done, but there is still a small part of me that feels like I shouldn't need to rely on anyone else to help me. I've always been "the strong one" in my family--the one that everyone comes to when they need something, a shoulder, an ear, encouragement, whatever. They all come to me and expect me to fix it. The only one who has never expected that of me is John, even now he doesn't expect that. But I guess because of years of conditioning I still have that little bit of a mindset in me. I'm still waiting to hear back from some support groups for John and myself. We all need help dealing with this new way of life.