Really rough day today

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Comments

  • AceSFO
    AceSFO Member Posts: 229
    #22
    butterfly23 said:

    Hi Adrian
    Hi Adrian!

    I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
    Your friend
    karyn

    Thanks, Karyn!
    Most of the
    Thanks, Karyn!
    Most of the time I don't feel helpless. Years ago someone suggested to me that you can only feel helpless in a situation where you can do something and don't. If you're doing everything you can, then you're not helpless. I try to keep that in mind, and that there are a lot of things that nobody can do anything about.

    I'm sorry your husband had a rough time of it yesterday. Does he have enough support around him? John and I used to banter about which one of it had it harder - each insisting that it was harder for the other one. I think it's harder for the patient, he thinks it's harder for the caregiver. So after playfully arguing that one out, we agreed to disagree. Or agree that it's hard for each of us but in different ways.

    Anyway - I think about you guys often and hope your pain isn't too bad.

    take care -
    Adrian
  • ittapp
    ittapp Member Posts: 383 Member
    #23
    I think something was in the
    I think something was in the air for a bad day yesterday.(does that make sense?)You are a wonderful caregiver and you both are lucky to have one another. My hubby is my rock and I need that soooo badly in my life. So, enjoy one another today and I pray for better days for both of you!! God Bless you, Patti
  • patsy1954
    patsy1954 Member Posts: 85
    #24
    Hope Today is Better
    So sorry to hear of his bad day, and hope that he feels better every day. I know that I feel much worse for what my husband is going through with my having cancer than what I am undergoing with the chemo. Just wanted to say way to go on going up Katadin. I'm from Maine and I love Baxter State park. Didn't go this year due to the chemo and such a long distance from medical care, but I plan on being there in 2010! Take Care and my prayers are with both of you.
  • robinvan
    robinvan Member Posts: 1,012
    #25
    AceSFO said:

    Thank You All!
    Dear Kathleen, Rob, Don, Gail, Kim, Sonia and Bill,

    Thanks so much to each of you for writing. It really helps. Today is much better. The excruciating pain he had after the sig is gone and we're both feeling good about things.

    The short story is that we live about 45 miles from our healthcare facility, and we were having a fierce storm in California yesterday. Trees were down on the freeway, we passed lots of accidents (one fatal) and it was hard to control the car in the gusty winds. We made two trips down and back. The amount of air the introduced to his intestines for the sigmoidoscopy put him in what he described as the worst pain he's ever been in. He's had several kidney stones and it was clear to me that this was much worse. I can't believe they would subject a person to that (part of it was to get 3 tissue samples from the anastomosis to biopsy) but I wasn't in the room when they did it. Next time, I will be. However we got it under control before we left in the evening.

    We talked to his oncologist yesterday evening (she stopped by after hearing about his situation) about stopping the chemo which is so hard on him. She reminded us that we were only doing it to manage pain and now that the Fentanyl and MS Contin have brought the pain down, there's no reason to keep doing the chemo. It won't have an effect on slowing the disease. So we're both feeling good about that, and I asked her about the Dendritic Cell Immunotherapy I had been reading about and while she had heard of it, she didn't know much about it and promised to look into it and get back to us. I know it wouldn't do anything for his sacral tumor, but it could slow or even prevent the spread to other parts of his body. And, unlike almost every other cancer treatment, it's painless and has no side effects. go figure.

    So we're feeling good. He was supposed to have chemo this coming Thursday, but since he's not, we can go to a concert on Friday night and enjoy ourselves.

    Thanks for all your wonderful comments - it really helps - other people can empathize but you guys really know. Thank You.

    with love,
    Adrian

    PS I posted a photo of us on top of Mt. Katahdin in Maine on my "expressions" page. During his first round of chemo in '07/08 he held onto the image of us climbing to the top of that mountain to get him through. Much to my surprise, two months after chemo ended we did just that! It was more exhilarating than words can express. (He grew the beard during chemo but shaved it off afterwards - one of the only people I know who got more hair during chemo)

    Mt. Katahdin!
    What a great picture! Truly an Eastern Mountain worthy of being called a mountain!! :):) We are so spoiled in BC and California!

    After my first go round with this beast (Colon Rx, Liver Rx, Chemo) I came out all clear... NED. We sold the town house and took the girls on an awesome trip to the Maritimes, New York City, and Cape Cod. Very memorable milestone.

    So glad to hear that the pain is being better managed and that the chemo question is resolved.

    HYITL... Rob; in Van
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #26
    AceSFO said:

    Thanks, Karyn!
    Most of the
    Thanks, Karyn!
    Most of the time I don't feel helpless. Years ago someone suggested to me that you can only feel helpless in a situation where you can do something and don't. If you're doing everything you can, then you're not helpless. I try to keep that in mind, and that there are a lot of things that nobody can do anything about.

    I'm sorry your husband had a rough time of it yesterday. Does he have enough support around him? John and I used to banter about which one of it had it harder - each insisting that it was harder for the other one. I think it's harder for the patient, he thinks it's harder for the caregiver. So after playfully arguing that one out, we agreed to disagree. Or agree that it's hard for each of us but in different ways.

    Anyway - I think about you guys often and hope your pain isn't too bad.

    take care -
    Adrian

    Caregivers
    Hi Adrian,

    I honestly think it's harder on good caregivers. I take my hat off to them--to you.

    When my sister was sick, though I wasn't her primary caregiver, I helped bathe her and took her shopping when she felt up to it. It broke my heart to see her waste away to nothing when I pulled up her Depends after her bath and to see the stares in public when I took her out. It was so hard to hear her painful moans and groans knowing I couldn't do anything to ease her physical pain but just tried to love on her. Her courage was beyond measure. Then we're the ones left behind to deal with our loss and quite frankly, it sucks.

    When I got my dx I felt empowered to take action and be in control of what I could and just accept what I couldn't. I felt it was much easier being the patient than the caretaker. Now granted, I never got to the state that my sister got and wasn't dying per se and after my surgery I wasn't in any pain at all. Before yes, incredible pain, but not after. So maybe that part's worse. But the day to day, I felt worse for my family and how hard it was on them to have me "sick" and maybe not be here for them.

    ((((CAREGIVERS))))

    Just my experience for what it's worth.

    peace, emily
  • lesvanb
    lesvanb Member Posts: 905
    #27
    hang on tight
    sending you lots of {{love and healing}}

    Love, Leslie
  • grammadebbie
    grammadebbie Member Posts: 464
    #28
    SoSorry
    So Sorry you guys are going thru this. Uncontrolled pain is horrible. Even if you would have been in the procedure chances are they wouldn't have listened to you. My husband almost got kicked out the emergency room when they wouldn't control my pain. My pain management doctor gave me his cell # so I will never have to go thru that again. When pain is involved were kinda at the mercy of the doctor. If you don't fall within the norms it's just too bad.

    Glad things are getting better. I will be praying for you.

    Blessings to you both,

    Debbie (gramma)
  • johnsfo
    johnsfo Member Posts: 47
    #29
    grammadebbie said:

    SoSorry
    So Sorry you guys are going thru this. Uncontrolled pain is horrible. Even if you would have been in the procedure chances are they wouldn't have listened to you. My husband almost got kicked out the emergency room when they wouldn't control my pain. My pain management doctor gave me his cell # so I will never have to go thru that again. When pain is involved were kinda at the mercy of the doctor. If you don't fall within the norms it's just too bad.

    Glad things are getting better. I will be praying for you.

    Blessings to you both,

    Debbie (gramma)

    Thank you!
    Thank you all for offering Adrian such fine and loving support. That was a bad day. Even in the midst of all that pain I knew how hard it was for Adrian. All of you are correct: Adrian helps me so much, even by just being with me. And he does so much more than that. As he describes, we have a playful banter about which of us has the harder time and neither of us is going to win that argument.

    Just before I checked into this forum, I received an email from a friend who told me that the director of the program I work for described me as "her hero." I responded that if I have a hero, he is Adrian.

    All of you caregivers, YOU ARE HEROIC! My unbounded appreciation for all you do for all of us.

    John
  • dorookie
    dorookie Member Posts: 1,731 Member
    #30
    johnsfo said:

    Thank you!
    Thank you all for offering Adrian such fine and loving support. That was a bad day. Even in the midst of all that pain I knew how hard it was for Adrian. All of you are correct: Adrian helps me so much, even by just being with me. And he does so much more than that. As he describes, we have a playful banter about which of us has the harder time and neither of us is going to win that argument.

    Just before I checked into this forum, I received an email from a friend who told me that the director of the program I work for described me as "her hero." I responded that if I have a hero, he is Adrian.

    All of you caregivers, YOU ARE HEROIC! My unbounded appreciation for all you do for all of us.

    John

    I Second that
    Without my partner(Wendy) I would have been so lost, she takes such great care of me, now and druing my cancer journey. She is my angel and I tell her that all the time. I have seen the pain in her eyes just watching me having to go through chemo, radiation, surgeries, and then to have to do it all over again. She stuck by myside and continues to do so, she is MY HERO!

    God Bless
    Beth
  • Shayenne
    Shayenne Member Posts: 2,342
    #31
    grammadebbie said:

    SoSorry
    So Sorry you guys are going thru this. Uncontrolled pain is horrible. Even if you would have been in the procedure chances are they wouldn't have listened to you. My husband almost got kicked out the emergency room when they wouldn't control my pain. My pain management doctor gave me his cell # so I will never have to go thru that again. When pain is involved were kinda at the mercy of the doctor. If you don't fall within the norms it's just too bad.

    Glad things are getting better. I will be praying for you.

    Blessings to you both,

    Debbie (gramma)

    Why???
    ...Did they not give him any pain medicine for his procedure?? I know you caregivers have it worse then the patient for sure, I couldn't watch my hubby or kids going through what I'm going, I'm glad it is me and not them.

    I am so sorry to hear about John, but soooo glad he is feeling better today, and you are going out tomorrow! I hope you both have a blast, and he is in good spirits, hopefully that onc will look more into what can be done as well, there is so much out there, you only hope that you're a good enough candidate for their therapies!

    Hugssss to you and John! you are both in my thoughts and prayers :)

    ~Donna
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #32
    pain med during sigmoidoscopy
    Hi Adrian (and John),

    I'm sorry that so much pain was experienced during the procedure yesterday. After not getting any pain meds or "twilight sleep" meds during my first sigmoidoscopy and having a lot of pain during it, I requested ahead of time to get it the next time & they did accomodate me. I'm not sure why, but at least where I go, they say it's standard to give pain meds/twilight sleep during full colonoscopies but not during sigmoidoscopies. The next sigmoidoscopy I had, I requested and had the pain meds and it made all the difference! I most recently had a full colonoscopy (the first full one since my diagnosis 2 yrs ago), had the meds and experienced no pain or bloating this time.

    Things will get better- you guys hang in there.

    Lisa
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #33
    ittapp said:

    I think something was in the
    I think something was in the air for a bad day yesterday.(does that make sense?)You are a wonderful caregiver and you both are lucky to have one another. My hubby is my rock and I need that soooo badly in my life. So, enjoy one another today and I pray for better days for both of you!! God Bless you, Patti

    Something in the air in California too
    I agree that something was in the air yesterday. After I had gone to get my PICC line dressing changed I ran into a friend who I havent seen in 5 weeks or so. She stated that I'm sure loosing weight with this cancer thing. I talked with her for awhile then went home and lost it. I cryed for awhile, called my brother and talked to him some. The only one home was my 15 year old son. He seen me crying in my room and came in and sat down beside me. He didn't say anything. He didn't need to. He was just their for me without any need to ask. This came out of a 15 year old boy. After a while I got it together and came down and read Craigs post "Lets just talk" for the 3rd time (Craig you are a brave man and you need to hurry up and get back on the board because we need you)and felt much better. So maybe something WAS in the air yesterday.

    Brooks

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