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cholangiocarcinoma

LindendarLindendar Posts: 2
edited April 2020 in Diagnosis & Appointments

Has anyone on this site also suffering from this cancer

Comments

  • LouiseJLouiseJ Posts: 771 ✭✭✭✭✭

    Hi @Lindendar

    I have to admit, I had no idea what this was. I have just looked it up.

    I am very sorry to hear if this is your diagnosis. Will you be having treatment?

    It maybe that someone else on here is also being treated, hopefully they will speak up.

    You are very welcome here, even though our cancers may be different, mine was breast cancer, the effects of cancer upon our lives can be similar, treatments like chemo and radiotherapy etc have common side-effects. The shock and devastation that cancer brings with it affects us all.

    There are many here going through all different types of cancer and at varying stages, you will find a lot of support and understanding here.

    Please feel free to come and chat anytime, about anything.

    Hope to chat soon,

    Lou x

  • LouiseJLouiseJ Posts: 771 ✭✭✭✭✭
  • ChriskChrisk Posts: 7

    Hi , I was diagnosed with cholangiocarcinoma about 18 months ago after being unwell for a few weeks. I had an operation at the QE Birmingham to remove 3/4 of my liver and resection the blood vessels.My recovery was long and hard and I spent 8 weeks in hospital recovering. Chemo finished 6 months ago but like most posts I read I am still struggling both physically and mentally . I am trying to be positive and do a bit more each week but to be honest some days it seems too much energy is needed to do much more than get up and showered! It won’t beat me I have gone through too much for the big C to win ! How are you doing and whereabouts are you in your treatment ? I am online most days , so if you want to chat please message me

    regards Chris

  • LindendarLindendar Posts: 2

    Hi Thanks for the comments.I was diagnosed 10 months ago unfortunately I cannot have a op.Ihave been on chemo for 6 cycles chemos was stopped due to my platlets being low at the last scan everthing was stable I am now waiting for another scan possibly in June.Appreciate your comments

  • ChriskChrisk Posts: 7

    Fingers crossed your scan will still be stable . When your platelets recover a bit then more chemo I guess. It’s pretty gruelling isn’t it ? I find the time waiting for the scan results is almost unbearable. You can do this !

    Keep strong and be kind to yourself.

    B est wishes

    chris

  • RoBRoB Posts: 1

    Hi, my husband was diagnosed with Cholangiocarcinoma last Oct. he’s been on gen/cis since. He’s had a few complications including sepsis. He was stage IV when diagnosed, so no resection.

    His Dr told him he would always be in treatment. It’s a tough disease. His Dr is always saying that he is doing really well (except for the sepsis). In spite of this, he is always tired and in pain from one thing or another.

    His ‘good’ days are much fewer than we expected, especially after 6 months of chemo.

    i hope he eventually gets to a NED statis and has more pain free days.

  • Blanka_CBlanka_C Posts: 406 Community Admin

    Hi @RoB,

    Welcome to the community and I'm so sorry to hear about your husband's diagnosis. It must be very tough for the both of you.

    I'm no expert myself but wanted to let you know that we do have two very supportive and friendly experts on here who you can always ask for further advice if you feel like it.

    @Untire_App are cancer fatigue specialists and @LizzyB73 is an oncology specialist nurse. Their expert page is full of great advice:

    I do hope your husband gets better and has less painful days very soon. Please do remember you're always welcome here, there's always a pair of ears to listen. x

    Best,

    Blanka

  • LizzyB73LizzyB73 Posts: 112 Oncology Specialist Nurse

    @RoB

    Thanks to Blanka Ron linking us in

    I can only imagine how hard things are for you right now. Cancer fatigue is that one as nurses we find the most hardest to deal with as we have no magic wand to make it better.

    Small goals each day and allowing the body to rest when it needs to seems to be a good mantra for those going through this.

    Please do get in touch with anything specific and I will try and help

    best wishes

    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • Untire_AppUntire_App Posts: 20 Cancel Related Fatigue Experts

    @Blanka_C Thanks for sharing about us as cancer fatigue isn't something that is widely discussed. Glad to see such a supportive community here. 

    ❤️

    Hi @RoB ,Thanks for sharing your situation with your husband's diagnosis. Cancer-Related Fatigue is a very common side effect of cancer and its treatments. Fatigue after cancer is different for everyone. Unfortunately, about 80% of individuals will experience it within 1 year of diagnosis. For about 30-40%, it can last years after treatment ends. Life after treatment takes some adjustment to get used to "a new normal". We've heard from many patients and their families how frustrating it can be as there are many expectations (from others as well as yourself) to be able to participate in all the activities before diagnosis. As you mentioned there are good days and bad days. The Untire app was designed especially to help give tools and education to manage energy levels so there are more good days. As a caregiver, it is also important you take care of yourself as families and loved ones are also impacted by the burden of fatigue. I've included a link to our site that shares a bit more about how you can help as a caregiver.https://untire.me/en/caregivers/ Remember it will take some time but the fatigue will get better. Do let us know how things are going. You and your husband are not alone in this and we're all here to help!

    The Untire Team


    Facebook - https://www.facebook.com/UntireApp/
    Twitter - @UntireApp
    Website - https://untire.me/
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