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Viewing 14 posts - 16 through 29 (of 29 total)
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  • #90396
    lainy
    Spectator

    Hello to my Jen! You know I can’t resist a reply to you when you post. I bet the girls are ready to start college….LOL! Hope everything is going super good with you and your family. I can never forget your Dad either or his dream, before he relocated, of his visit to the table full of food! Sending you and yours all the best! I know he and Teddy are enjoying themselves.

    #90395
    jennifers
    Member

    Hi Scott,

    Sorry you ever had to search out this site, but your attitude will get you far, your humor is contagious. I’m in Calgary, and my Dad had cc.

    I just wanted to add my 2 cents about the port. Dad didn’t get one, and after a few months of constant pokes that got more and more difficult, he wished (and so did we) that he had gotten one. I agree that it’s something to discuss with your doctors.

    Wishing you all the best – I don’t post often, but read daily. I’ll be watching for your updates!

    Jen

    #90394
    darla
    Spectator

    Scott,

    I do believe you have chosen the right road of anticipation and curiosity over fear, anxiety & stress. Nothing to be gain by those.

    I think your are handling this all in a very positive way. Keep it up and keep posting. We do care about how you are doing and I think others will benefit from your uplifting attitude so you will be helping others as much as we hope we are helping you.

    A port may be something you want to ask your doctors about. It does make things easier.

    Take care.

    Darla.

    #90393
    lainy
    Spectator

    Scott, we will have to keep in mind your ‘solution’ to the pump noise.
    I never had chemo but had 3 years of infusions for Ulcerative Colitis and fortunately the drip, drip was silent. But the infusion nurse and I had some great conversations and I do miss him but not the infusions! I have a feeling you can handle anything and anyone!

    #90392
    scott-sibley
    Member

    I’ve already found something I don’t like….the sound of the IV pump……

    Head phones and Bad Company mixed with some John Prine took care of that….now, bring me the brown bag!!!!

    #90391
    lainy
    Spectator

    Scott, I so love your attitude, I look forward to your posts! I am so glad you attended Chemo 101, good for you. You mentioned reading and I just want to say that knowledge is our best tool for righting this monster. If you are looking for anything particular just go to the search button at the top and type in a word or 2 and many posts will appear on that subject.
    I feel having more curiosity knocks out the fear and anxiety. You have learned fast little Grasshopper. I do feel you are going to show Mr. Cholangio who the boss is going to be. So much good luck soaring your way on the chemo!

    #90390
    scott-sibley
    Member

    I went to “chemo school” 2 days ago. There was so much info. I have 3 scripts to take to help with the chemo effects. 1 of them is to take only for nausia. They told me I may lose the hair on my head, but not the useless hair on my back and arse…..this seems like a ripoff.
    Is it weird that I have more anticipation and curosity about this cancer journey, and less fear/anxiety/stress??

    “No one can judge effort, because effort is between you and YOU!!” – Ray Lewis

    #90389
    middlesister1
    Moderator

    Hi Scott,

    A port allows the doctors to take blood, give chemo, put dyes in rather than going through the veins. With Mom, we regret not getting in put in right away. Much of her stress was with them trying to find a vein and the chemo makes them more brittle. I think of it almost a a docking station.

    I hope the chemo goes well- wishing you much success and minimal side effects. If you get the time, you may want to search here and look up suggestions for chemo side effects. Off top of my head- make sure to stay hydrated. If needed, go in and get a bag of fluids. Also, many seem to do better when they get a steroid (dexamethosone). The docs can adjust as needed. And, chemo can be chilly- dress warmly.

    Best wishes,
    Catherine

    #90388
    scott-sibley
    Member
    marions wrote:
    Scott….welcome and yes, we would prefer to meet under different circumstances, but here we are and happy for it. Most likely you will receive Gemcitabine and Cisplatin, which is considered standard of care for our cancer and is discussed many times on this site. For any questions you may have, be assured that someone with similar experience will share thoughts, ideas and experiences with you. My first question: Do you have a port installed?
    Good luck tomorrow and please stay in touch. We are in this together.
    Hugs,
    Marion

    I do not have a port installed, also, I don’t know what that is…..
    In all honesty, I’ve done minimal research on cancer the last 2 months. The only stuff I know is what the doctors told me.

    Scott

    #90387
    marions
    Moderator

    Scott….welcome and yes, we would prefer to meet under different circumstances, but here we are and happy for it. Most likely you will receive Gemcitabine and Cisplatin, which is considered standard of care for our cancer and is discussed many times on this site. For any questions you may have, be assured that someone with similar experience will share thoughts, ideas and experiences with you. My first question: Do you have a port installed?
    Good luck tomorrow and please stay in touch. We are in this together.
    Hugs,
    Marion

    #90386
    lainy
    Spectator

    Hello, Scott and welcome to our remarkable family and I might add, I think we have a newbie who is going to slay this dragon! I love your attitude and it will get you anywhere, keep up the good work. My husband used to say, “Now we know what is wrong, let’s fix it!” I do wish for the chemo combo to work well for you and we do have quite a few members who were able to have surgery after their chemo. Trust yourself, the rest will follow! When first diagnosed you will start out walking slowly and before you know it you will be running with the pack! Please keep us posted on your progress and below is a site you may find helpful:

    http://cholangiocarcinoma.org/newly-dx/

    #90385
    mbachini
    Moderator

    Dear Scott,

    Welcome to this amazing family that no one really wants to be a part of, but are so glad to have each other. Keep that positive attitude, I believe it will get you far. I was diagnosed at age 41 and am now 47! I have had resection, recurrence, several rounds of chemo and most recently have had great success with an immunotherapy clinical trial. Don’t lose hope. Please keep us updated on your progress and don’t hesitate to come here for support. Here is a great link to start with…
    http://cholangiocarcinoma.org/newly-dx/
    Sending good thoughts and prayers your way.

    Melinda

    #90384
    darla
    Spectator

    Scott,

    Welcome to the group. We would not wish for you to have to be here any more than you want to have a reason to be, but rest assured you have found the greatest group of people to help and support you through this journey. We have all been touched by this disease in one way or another and know what a rollercoaster of a ride it is.

    Love your attitude. Keep looking forward. Looking forward to hearing more from you and how you are doing.

    Take care and keep doing. :)

    Darla

    #11850
    scott-sibley
    Member

    Hi everyone! Obviously, I didn’t want to be a new member here, but I’m glad to have found you all. Im 42 years old, I have a wife and 2 young children. A girl age 13 and a boy age 7
    After 2 months of scans, biopsies, scopes, and a special hearing of the Nova Scotia Tumor Board, I have been diagnosed with CC. It’s too big to operate on, so I start chemo tomorrow. 2 weeks on, one off… repeat. I dont remember the 2 drugs I’ll get during chemo, but they seem to be the standard issue.

    I really don’t have much to add yet, but stay tuned. I can tell you that I don’t care about the prognosis, I plan to write my own. Other than the first few dark days way back in September, I’ve been looking forward and not back. I can’t change the past, so I dont waste time thinking about it.

    “Do or do not, there is no try”
    “Everyone wants to be a beast, until its time to do what beasts do”

Viewing 14 posts - 16 through 29 (of 29 total)
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