lotsofquestions

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  • lotsofquestions
    Spectator

    Georgie , first of all never feel like you do not have a right to feel upset about your mother in law ! I always joke that we don’t marry a man , we marry a family. It is good that your husband is getting counselling… but do not forget to look after yourself as well. This disease affects the entire family. My step mother was diagnosed at the beginning of this year , and I know it has been hard on my family. My husband has been like you probably are .. he feels bad himself, he worries about me, he has extra care of the children, etc. It is such a bag of emotions.. I think I am being strong then I break down crying in the shower or when I am driving by myself in the car . Your phone will ring constantly with loving people being concerned , yet at the same time taking precious moments away from your children who you have tried to squeeze into your more hectic schedule. I do not mean to sound like I am complaining , because I love my step mother as I do my biological parents. I guess since it is fairly new to us as well , I don’t have the clinical advice that the others on this board do. I am just telling you what I have learned so far …try to spend as much time with her as you are able to , forget about the house work , laundry etc. I am not sure if you have children, but we did tell ours about their nanny being sick. They are 7 and 12 yrs old . We drew a picture of her body and where the cancer is and explained why the doctors can’t take it out. They now understand why our free time is limited right now and why nanny is sometimes tired or not able to play as much as she used to . Sometimes the unknown is more frightening to kids ( just like us ) . Just try to take each day at a time. None of us know what lies ahead ( thank goodness ) . I have found this board very informative. I have not posted many times, but whenever I had a question or concern , somebody here has taken the time to answer. Everybody here seems very knowledgable and definitely understanding … please keep us posted on how things go . I will be wondering about you , as your post sounds like mine did 2 months ago.

    in reply to: My Husband and Cholangiocarcinoma – Part 2 #42176
    lotsofquestions
    Spectator

    mlepp,
    I am still very new to these boards , but have been doing lots of “lurking” to find as much info as I possibly can. I must say , you and your husband are an inspiration. I realize that he is the one who is sick. But, illness affects a whole family , not just one person. You are so brave. I also admire how you seem to have maintained a sense of humour and you are taking the time to help others on this board ( including me ) who are unfortunately new to all this . Thank you.
    By the way , I am Canadian so perhaps the “rules” are different , but legally a physician can write an rx for a narc for up to 35 days . Not sure what it is in the US , but it may be easier if your Dr wrote for more days supply at a time. Also, remember when you do pay $$$ , keep your receipt for tax purposes as a medical expense. I am sure you have many other expenses and they all add up. Also, usually a pharmacy can use their discretion when it comes to filling narcs early. If they know your hubby , they should be using common sense and realize that he is legit.

    in reply to: Feeling clueless… #46708
    lotsofquestions
    Spectator

    Hello All,
    My step mother’s first chemo was scheduled for this afternoon. I had planned on attending with her as I have been anxious to meet her oncologist and hopefully get some questions answered. It was cancelled :( Her bilirubin was too high. They want it to be below at least 80 and she is at 144. She was 432 before the stent was put in at the top of her liver ( drains into a bag from her side , not sure of proper terminololgy ) and once that procedure was done, her bilirubin went down to 200 within a day or 2. That procedure was about 11 days ago . Here is my question … what are the chances that it will continue to go down ? I guess I’m wondering if she will ever get chemo. Has anybody ever had experience with it going down that slow and then actually getting to where it should be ? Thanks

    in reply to: Feeling clueless… #46703
    lotsofquestions
    Spectator

    Those are all excellent suggestions. Gavin, I especially like the idea of recording the conversations. I find so much is based on interpretation. Three or four of us sometimes listen to the doctor at the same time, and we often take away 3 or 4 different things. I am going with her on Thursday for her first chemo so I will be able to discuss things with her oncologist. As of right now, we don’t even know what stage her cancer is at. Thanks so much for all the help….

    in reply to: Feeling clueless… #46697
    lotsofquestions
    Spectator

    Thank you all so much for your answers. You are all correct. Nobody knows what lies ahead of us ( and thank God sometimes that we don’t ) It is just as you all said , it is hard to be on a roller coaster all of the time. I don’t live in the same city as her and I find my father only catches half of what the doctors tell him. As you all know , it so hard to hear good news in the morning ( she is sitting up eating her breakfast ) and in the evening your emotions crash when somebody calls to describe how bad her pain is. Then I wonder what is causing her pain … is it the cancer already or the procedures she has had the past 2 wks. So frustrating ! Her oncologist is sending her to another surgeon for a second opinion but has alway scheduled palliative chemo treatments to start on the 20th of Jan. Everything has happened so quickly and it is sooo overwhelming . I truly do appreciate having a place to ask questions and vent. Thanks :)

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