maybe silly question?

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  • #52847
    cherbourg
    Participant

    Dear Roni,

    I wish I could reach out and hug you. I stood in your shoes with my Mom before she died in April 2009. Everything you are feeling is normal….whatever that is….

    I’m including a link for the hospice AND PALLIATIVE CARE unit we used in Greensboro with my Mom. The link has some excellent information including a section on when to consider Hospice.

    http://www.hospicegso.org/

    Please know you are not alone and that we are here for you anytime. The only dumb questions are the ones unasked….*grin*

    One thing I will leave you with is a suggestion to get your Mom’s voice on tape. I miss hearing my Mom’s voice more than anything.

    Remember…you are not alone…

    Hugs,
    Pam

    #52846
    ronidinkes
    Member

    Thank you Adam,

    Please feel free to call me 443-394-6163 or email ronidinkes@yahoo.com or you can find me on facebook: roni dinkes.

    Sending much love back to you and your family during this difficult time.

    Warm Regards,
    Roni

    #52845
    adamek
    Participant

    Dear Roni,

    You are coping with a lot here. I am also playing the waiting game and know how difficult it is and how knowing something would seem to make it easier.

    I know what you mean about anger and lashing out. It’s perfectly natural. People will forgive you, particularly if you talk to them about it afterwards. Sometimes the hardest thing is to forgive yourself.

    I have been told by our oncologists that tumour markers are a poor indication of anything specific. My wife’s CA19-9 hit 11,000 in May but has subsequently gone down and is going down still. Despite this, she was physically quite well in May and is very poorly now. I think cancer is a disease that does not always behave in predictable ways and that its development changes in its intensity for no apparent reason. It makes it difficult when you want some understanding of the future to give you a little peace of mind. We are both in the same position.

    With greatest sympathy,

    Adamek

    #52844
    gavin
    Moderator

    Roni,

    Yes for sure talking things over certainly helps and I am glad that you are meeting with someone on Thursday to do this. In addition, we also have our Dr Giles and he can be found here –

    http://www.cholangiocarcinoma.org/ask.htm

    Maybe it would also be worthwhile contacting him as well? Just a thought.

    My best wishes to you and your mum,

    Gavin

    #52843
    ronidinkes
    Member

    Thank you so very much for your advice.

    Grieving the death of my parents 42 year marriage, and then the constant worry and anticipation of what is to come coupled with my anger at the world is a bit too much.

    However, rest assured I started medication to take the edge off. I also am talking to someone on Thursday, I think getting it out and off my chest saves my family from my wrath.

    I am thankful for this website. :)

    Regards,
    Roni

    #52842
    marions
    Moderator

    Oh Lainy…thank you. But knowing you and Teddy, things would have evolved for you anyway, but I am glad to know that I was of help.
    Hugs
    Marion

    #52841
    lainy
    Participant

    Marion, I know first hand how right you are! I could not have got through any of Teddy’s last 3 months without you and what you said about Precious Memories. That is exactly what I mean by making precious memories to carry you through. It absolutely works! I can barely remember if he had pain or not at home because what I remember is his hugs, wanting to dance and his “thank yous for making that for dinner for I am so sorry, I just can’t eat”.
    Or his telling each new Nurse that we were on our honeymoon and oh, so much more. In fact just yesterday his sister and I were talking about his incredible level of pain tolerance and how in 5 years he NEVER once complained. Guess its also about the person he was, not so much the CC he had. And no I am NOT in
    denial as unfortunately I DO remember what happened at the Hospice Facility iself. Thank you Marion, I really try to help care takers get in to this making memories mode and you have substantiated it. Like I tell myself even now when I get down, “Shame on me, I had for 17 years what most people never have in a lifetime”. I am most greatful and I am lucky as Teddy still lets me know he is around me. OOPS sorry the fingers just went at it and I didn’t mean to write a book!

    #52840
    marions
    Moderator

    Dearest Roni…..Edward Myers, says in his book

    #52839
    gavin
    Moderator

    Dear Roni,

    I can so relate to what you are going through right now. I was with my dad as he went through what he did and I can so understand what you are feeling right now and how you feel. The emotions that you feel right now are so normal, as are the feelings of being overwhelmed. And you might not believe that you will have the strength needed here to do what you need to do, but you will find that strength. Your feeling of anger is also totally normal, I felt that too when my dad was going through this. What I would say to you as well is to keep coming here as much as you feel you want to as so many of know how you feel right now.

    The word hospice and often what that word is associated with can be frightening and I can understand your mums feelings with this. But hospice care will help ensure that your mum is made to feel as comfortable as possible and they will do whatever is needed to help deal with her symptoms. They will help control her pain and they will be there to do whatever it is that your mum needs from them. My dad was in hopsice care and they did an amazing job to keep him comfortable, deal with his pain and do what he needed to have done to keep him happy.

    One thing I would like to say to you here. In your first post on this thread you say that your mums Onc has no idea what is going on, then in your next post here you say that your mums Onc does not think that she is ready for hospice. Lainy has talked so many times on these boards about gut feeling and doing what someone thinks is right according to their gut, and I believe very strongly in what she says about this. And like you, I don’t understand the “standard” either regarding when hospice should be utilised according to what someone else says. What do you think right now?

    I know that discussing hospice care with your mum will be a tough discussion for both of you to have right now, but I think that your mum will benefit right now from being under their care. That is just my opinion and others may disagree with that.

    This is such a tough situation that you are in right now, but we are all here for you. Please, keep coming back as much as you want. And I know that you will feel angry again, so come here and shout, scream and vent as much as you want. We do know how you feel.

    My best wishes to you and your mum,

    Gavin

    #52838
    lainy
    Participant

    Roni, Roni I feel what you are going through. It is totally normal and please believe me when I tell you that the strength will be there! That is such a sad story about your Dad moving out. You really have a lot to contend with. Probably a woman coming in daily from 10AM – 5PM is what Mom needs for right now. The important thing is for her to conserve strength and be stress free, which obviously she can’t be right now. Talk about sickness and in health. I think yhou are feeling the strain of both events taking place, wish there was something I could do for you. You know you can email or call me if you want to talk. Hospice usually begins when there is pain to manage, a patient gets confused or needs more help…like bathing, dressing and where Meds are often added or changed. You rMom needs to know that Hospice is not just for the terminally ill, many people after large surgeries have Hospice to get them through the rough spots. It does NOT mean the end. You will not learn a lesson yet, but you will learn a life lesson.

    When God solves my problems I have faith in his abilities, when he doesn’t solve my problems he has faith in my abilities!

    #52837
    ronidinkes
    Member

    Thank you for listening.

    This has been the most difficult 14 months, and I fear what is coming, I feel it is coming sooner rather than later.

    Sometimes I wonder, how can it get worse, and yet as I see her shrinking before my eyes.

    I still see the sparkle in her eyes, and hope in her smile, and she wishes for a cure, a quick fix, like this whole experience is a dream and is just too aweful to be a reality.

    Mom’s weight is quite low. Her pain is intermittent. Somedays are fine, others are beyond words….nothing everyday yet. She has percocet and bentyl she takes for pain coupled with tons of gas-ex.

    Her oncologist feels she is not ready for hospice, but I fully do not understand the “standards” that permit hospice services to be utilized. My mother is frightened by the word hospice.

    She was supposed to come and visit but, that has been pushed back 2 weeks, which makes me sad. Sad I have to sit on a telephone conference call during MD apptointments, because I am not physically there to hold her hand.

    My father has moved out of the house after 42 years of marriage. The situation is almost unbearable.

    The timing is horrible and beyond words.

    We hired a woman to help mom daily 10am-5pm. She makes her meals, acts as a companion, to be there just in case she needs anything.

    Sometimes, I wonder how this whole experience will make me stronger?
    What lesson am I to learn from the pain.

    Sometimes, my anger lashes out to those closest to me, and I find it hard to breathe and control my emotions. This waiting game, is exhausting and painful to everyone involved in the horrible experience. Sometimes, I just do not know what to do.

    Thanks for listening.
    Regards,
    Roni
    ronidinkes@yahoo.com

    #52836
    lainy
    Participant

    Dearest Roni, no silly questions, it is silly if one doesn’t ask! The first thing is to get your Mother’s pain under control. When there was no more that could be done for Teddy, his pain was not every day, later on though it was an everyday occurance, but kept under control. Roni, you know me, I say it like I see it…..I really believe that most patients get an inner feeling and perhaps your Mom feels ‘I have been through enough, no more, I am comfortable with what lies ahead’. So, with all that said, I agree with you it’s all about a time frame. When you feel your Mother is ready, after discussing Hospice with her, call your ONC and he will put in the order. They start once or twice a week and they will help make your mom pain free, and give her a calm sense of security. THe CA-19 has nothing to do with calling Hospice. You need to call your Mom’s ONC and ask if he feels it is time. They do start up to a year ahead of final prognosis if needed. The ONC sets it up and they come out within a day or 2 for the interview and after that it all just flows. Wish we could chat more upbeat but it is what it is.
    When God solves my problems I have faith in his abilities, when he doesn’t solve my problems he has faith in my abilities!

    #52835
    marions
    Moderator

    Roni…there are no silly questions on this site. All of us are here to support each other in any way we can. I have learned: Given the situation, rising tumor markers combined with physical symptoms very likely represent disease progression. When do we call hospice? Not according to tumor markers rather we make that decision whenever the need arises for extra support either, physically and/or emotionally.
    Have you had a chance to broach the subject with your Mom? Do the current medications keep her pain under control? Eventually symptom control will take precedence over everything else.
    Hang in there, Roni.
    All my best wishes,
    Marion

    #5655
    ronidinkes
    Member

    My mother’s CA 19-9 went from 300 to 1,900. That to me a substantial increase.

    The physician has ordered another CT-scan.

    Mom is having intermittent unbearable abdominal pain that comes for 2 days and then goes away?

    Her oncologist has no idea what is going on? She refuses a MRI and PET scan. She has refused chemo, and is too tiny for Chemo, even if she changed her mind.

    She did have radiation in March, but that is a 1 shot deal.

    Sometimes I wonder what is the point of these tests if patients are not interested in treatment? Maybe it is for a “time frame?”

    A bit overwhelmed today. Lots going on. Is there a number on the CA 19-9 when the doctor says “it is time to call hospice?”

    Thanks for listening.
    -roni
    ronidinkes@yahoo.com

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