Just had diagnosis.

FormerMember
FormerMember
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Hello, I have recently found out my prognosis and I am looking for any advice. I have lost my confidence, don’t want to go outside my living room, I don’t have an appetite. I am trying to stay positive but only find out this Thursday if I can have palliative chemotherapy. Which might give me 5 months.

  • Hi and a very warm welcome to the online community

    I don't have any experience with bile duct cancer but I noticed that your post had gone unanswered.

    It's not surprising that you have lost confidence after being told your prognosis and I'm hoping that you have had some positive news from your meeting with your cancer team today.

    You might find it helpful to have a chat with one of the nurses on the Macmillan Support Line. You can call them free of charge on 0808 808 0000 anytime between 8am and 8pm everyday. They are available to give advice on a range of topics or can simply listen if you just want to talk.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember in reply to latchbrook

    Hi latchrook, thank you for your post,  unfortunately I’m not  suitable for chemotherapy as my  cancer is to for  Advanced. still I’m trying to live ever day as best I can. I think I’ ready to  except my situation, and it has given me the chance to say good  goodbye to family and friends.there are still things I want to do so not yet ready to give up just yet.God bless.Darwin 123

  • Oh, I'm really sorry to hear that you can't have chemotherapy  but I'm glad to hear that there are still things you're planning to do.

    You might like to join the living with incurable cancer group where you can discuss all sorts of things including making the most of your life. It's a group specifically for people with an incurable or terminal diagnosis and if you'd like to join just click on the link I've created.

    All the best

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    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember

    Dear Darwin

    I am so dreadfully sorry to find you here.  This is a sneaky cancer unfortunately i lost my husband to bile duct cancer 2.5 years ago.  There is only 1 charity in the UK currently raising funds for research for a cure and treatment.  Please, please get in touch with AMMF you will find them on google.  They will be able to answer many questions and offer support and assistance, maybe put you in touch with specialists for second opinions.  They were very supportive to me.  There annual conference is in May the first week, i think its 8 or 9 May it is based at their headquarters near Standsted Airport.  I have been several times, all all the country specialists surgeons  oncologists doctors research fellows everything attend.  It is a go to place for Bile Duct Cancer support.  please get in touch with them.

    Kindest regards

    Alison

  • FormerMember
    FormerMember in reply to latchbrook

    Dear community champion.  

    May i ask why you are not suggesting patients suffering with this rare cancer are not signposted to AMMF ?  They are the UK's only charity which offers support for suffers of this disease.  Cholangiocarcinoma is classed as a rare cancer and patients need support and AMMF has all the information, access to surgeons, specialists doctors, international research, everything - Please may I ask that you refer patients of this cancer to their website  www.ammf.org.uk .   

    Kind regards

    Alison

  • Hi Alison

    It's great that you have been able to point Darwin123 towards AMMF. You will see from my post that I said that "I don't have any experience with bile duct cancer" so I didn't have any knowledge of this group.

    As a Community Champion I'm a volunteer who found the Community to be a great place for support when I was diagnosed with melanoma and wanted to give something back to the Community members. The groups that I am Champion for are the skin cancer and the melanoma groups.

    My role as a CC, besides looking after the members of the skin cancer and melanoma groups, is to welcome new members and help existing members by suggesting different groups that are available for them to join or signposting them to other areas of the site, eg ask a nurse, etc. This role includes replying to posts that have gone unanswered such as Darwin123's post.

    Unfortunately, the bile duct cancer group doesn't have a Community Champion yet and Macmillan are always looking for people who would be prepared to volunteer their time as a CC. If this is something that you would be interested in doing please click on this link.

    Thank you once again for responding to Darwin 123.

    Regards

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember in reply to latchbrook

    Hi Darwin. 

    So sorry to hear about your situation. My husband passed 7 months on the 21st of this month. There was hardly any info provided to us at the time of his diagnosis. My husband didn’t want a prognosis and it was too advanced for chemo or anything else. It’s such a rare and sniper type of cancer, just sneaks up on you. He lasted 12 weeks from diagnosis and was only 48. 

    I hope you get more help and advise and live every day to the fullest that you can. 

    Sending my thoughts with you. T xx