stacie

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Viewing 15 posts - 46 through 60 (of 178 total)
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  • in reply to: Intro from Canada – My 47 yr old wife Tammy #17662
    stacie
    Member

    Ron,

    Thanks for posting. You represent a large number of people, just reading but not participating. We realize that putting your personal life out for any one to read can be a little uncomfortable – but thank you so much.

    It helps us all when we can connect with some one else and since Cholangio varies so much, the more we know and the more people who participate, the better armed we are to fight. Every piece of information is valuable, when there are so few of us.

    Please tell Tammy we will be thinking about her.

    Please put your blog on the family blog area, so we can all keep updated. If you need help email rick@cholangiocarcinoma.org

    Thanks so much,

    Stacie

    in reply to: Abdominal Fliud Retention positive for Cancer Cells #17695
    stacie
    Member

    Karen,

    I remember when Marianne told me that they had decided to put Mark (my brother) on hospice. I felt like I’d been punched in the stomach. We couldn’t possibly stop fighting… but then I realized that while I still had more fight in me, Mark was done fighting.

    It will be hard for a few days after you and your mom make that decision, but those last few weeks with Mark are ones I will never forget. I wanted to move in and spend every second with him. I spent several nights with him so Marianne and the kids could sleep and I count those nights as cherished memories.

    We’ll be thinking about you.

    Stacie

    in reply to: The waiting game #17638
    stacie
    Member

    Hang in there Kris.

    Always, the days after the scan (waiting) and the day we met with the Dr. about the scan were the most stressful.

    We are all thinking about you. Jeff’s right… I think the strength comes and goes. It’s much easier to be strong for someone else than for yourself – at least for me. We’ll be strong for you, you just cry until you can’t any more and then take a deep breath.

    Stacie

    in reply to: What do you ask for when you pray? #17531
    stacie
    Member

    Oh Maryanne,

    I’m so sorry to hear about Heidi. We’ve followed your blog all along. I’m sad to hear that Joe is feeling queasy again, but I hope that this will subside as well. Please know that you are in our thoughts and prayers.

    Stacie

    in reply to: angry stage #17295
    stacie
    Member

    Teresa,

    I read your post and thought of our family. I think our family was a bit opposite. We all wanted to be with Mark every second of every day from the time he was diagnosed. We could never do enough and Marianne finally had to set some limits so that their family wasn’t overwhelmed by us 24/7. The Dr’s office made a new rule that only the patient and two additional people could be at appointments. I think 8 of us all being there at every appointment was a bit much.

    Feelings were hurt if someone was assigned to a certain appointment and someone else didn’t get updated immediately, everyone wanted to be doing something to help, but there were only so many jobs that could be done. We started the family website as much for our family as for others. Marianne couldn’t spend her entire day on the phone updating everyone of us individually. It was a difficult time for us but in a different way.

    On the other hand, a couple of years ago my husband’s grandmother was dying – old age – she was 90. She was a very graceful but firm lady. As she was preparing to die and hospice was coming in to help daily I felt compelled to spend even more time with her. I would get lotion and rub her hands and arms and her feet and legs. I would turn on music she loved and spend hours just sitting and talking with her. I felt like it was sacred time. In contrast, her two grand daughters (my husbands sisters) did not spend time with her. It made them uncomfortable and they just couldn’t do it.

    I think because we are human beings and because we are all so different, we just react differently to situations that make us nervous or afraid. I think it is natural. Some of us avoid things that make us uncomfortable and some of us just charge right in and work to make it better. It’s just how we’re built.

    While I wish your sister would have just come. I think she may have been asking if you needed her. Some people need invitations into our lives – clearly my family needs an invitation to back out (haha). But the hardship is the same. Since everyone grieves differently, even those closest to us don’t know the appropriate way to help – sometimes the grieving person just has to say… this is the best way you can help me.

    I don’t know why this is, but I’m so glad you are focusing on those who have helped and comforted you through this situation. Focusing on the blessings of this situation has been the only thing that has allowed me to move past all the sad feelings and move forward.

    I think I should probably have Dr. Giles address this issue as it comes up often. And Marianne has talked about writing a book on how to help people know how to reach out to people in a tragic situation. It sounds like perhaps it could be a joint effort.

    Much love to you and yours

    Stacie

    in reply to: Good News Daughter’s Thyroid non-cancerous #17403
    stacie
    Member

    JeffG,

    I somehow missed this thread, so sorry Jeff for not responding earlier but so relieved to know all is well.

    Stacie

    in reply to: angry stage #17284
    stacie
    Member

    Betty,

    Thanks for sharing this, I never experienced anger after Mark’s death, I felt very peaceful, but yearning is the emotion that I have experienced most.

    We are quickly approaching Mark’s birthday in December and then the 1st anniversary of his death. I still look at his picture every day on the piano in our front room and can not believe that he is gone.

    Stacie

    in reply to: I never wanted to post here #16998
    stacie
    Member

    Jules,

    Thanks for sharing that with us. It was beautiful.

    Stacie

    in reply to: Foundation Meeting in SLC – results #17111
    stacie
    Member

    Rick told us at the foundation meetings there are approximately 60,000 page views a month on this website. Can you imagine?

    400 participants as of this evening. The kudos go to Rick!

    in reply to: Sorafenib, is there a certain criteria? #17168
    stacie
    Member

    Soraphenib was looking very promising for many GI cancers, but the reports that came out of the the last two ASCO meetings were very disappointing. We’ve had a few patients on the website who tried it and neither fared well. Of course, consult with your Dr. but be sure you have seen the latest information before you make a decision.

    Stacie

    in reply to: Very generic question about tumor growth #17046
    stacie
    Member

    Fairydrop,

    What treatments has he been doing? Has he done any alternative treatments in addition?
    When he was “all clear” did he continue to do anything during that time?

    Stacie

    in reply to: I think it is time I introduce myself. #17021
    stacie
    Member

    Colleen,

    I’m so glad you introduced yourself. I think there are many just like you who hesitate to share in such a public forum.

    Frankly, I don’t think any of us would choose to hang out at a cancer site, but here we are, something terrible has brought us together but together we can help each other and we can make this site a source of information and hope for others.

    We look forward to your blog. I know it was so helpful for our family and especially for so many friends and neighbors, who wanted to help. So many want to call and ask how things are going, but are nervous to do so. Nor do you want to spend your day going over and over the same things. It really makes communication so easy and it helps everyone on the website as well.

    Cholangiocarcinoma is a burden for all of us, but burdens are lighter when they are shared and there are strong shoulders here.

    Stacie

    in reply to: CT Scan 3 Month Follow-up #17009
    stacie
    Member

    Jeff,

    So good to have you home. I think you might want to start a personal blog so we can see all your pictures and have our JeffG daily affirmations (haha).

    Wonderful news on your scan. I’m also interested to know why you are switching oncologists.

    Stacie

    in reply to: Anyone with the disease have small kids (under 12?) #16766
    stacie
    Member

    Colleen,

    I was on a website that the foundation is looking at using to get information into the hands of oncology nurses about cholangio.

    They have several things on the website that are very interesting and that we are looking into before we link them to the site. However, one of the things I saw on the site that I thought was interesting is a book for children who are losing a mother or a father (different books) for each.

    The link is http://www.ons.org

    You go to the site and click on patient information. Then go to the bottom of that page and click on “My book about cancer”

    I’ve never seen the book myself, but it explains the intent.

    Stacie

    in reply to: I never wanted to post here #16983
    stacie
    Member

    Jules,

    The Lindsey, Clements, Pollock, Giles families send you their love.

    You and your father were always so gracious about sharing all of your research and experiences while going through this.

    We share your grief.

    Our thoughts and prayers are with you.

    Stacie

Viewing 15 posts - 46 through 60 (of 178 total)