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This topic contains 1 reply, has 2 voices, and was last updated by  Helen_ammf 2 years, 6 months ago.

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    Taken me ages to work out how to get started on this site!

    Having battled with being overweight all my life, I was delighted when the loss of appetite, feeling full topped with a little nausea started.  It made dieting so much easier.  Three stone lighter I was beginning to get fed up with the discomfort and heaviness I was feeling in the abdomen area. Not to mention the tiredness, which I kept putting down to arthritis.  

    By this time I had headed to my GP with what we thought was indigestion …but a couple,of symptoms alerted him and I was out on the fast track to a consultant.  This in the early autumn.


    Now as Christmas approaches I have had MRI, CT SCANS, countless blood tests, etc.  Referred to liver specialists.  Now I am waiting for another endoscopy and biopsies to confirm it is not just inflammation but that the cancer has spread not only into the liver and gallbladder but into the stomach as well.

    Big bonus ….no need to have to decide about an operation.  Now the big decision could be is the chemo and the tiredness etc that will bring going to be worth it.  Why add a few more weeks of nausea and general discomfort ..cannot call it pain at this stage, but then I am already on painkillers for arthritis? 

    My mantra is very much quality rather than quantity of life and to laugh and make others laugh … even the surgeon who broke the bad news …..and to love my dogs and cat as much as possible.

    Yes, the thought of severe pain frightens me, as does the thought of being so tanked up on morphine I can no longer drive.

    Other than a brother who has his own family, I have no family so my situation in many ways is easy compared to others.  My heart goes out to those with children, especially young children, with this diagnosis.  We keep being told the NHS is running out of money.  One of the reasons I am pleased I am inoperable ….at least I have not had the NHS spend that money on me ….I am a young pensioner and would have liked another five years. ….but not at great expense to the NHS when there are others who in my eyes, are so much more deserving.  Just my perculiar outlook on life.

     What I would really like to know is how long ….how many days or weeks can I put off sorting out that paperwork …or,is it really urgent I get on with it now. Gilly



    Dear Gilly

    Thank you for persevering and eventually posting on the discussion forum.

    I’m so sorry to learn that you have been diagnosed with inoperable cholangiocarcinoma – but your attitude is amazing, so selfless and altruistic.

    If you are inoperable, then chemotherapy is the treatment pathway that will be suggested, but whether to take that pathway or not is entirely your choice. The current Gemcitabine/Cisplatin combination (which is probably what will be suggested for you) is fairly well tolerated by most people, and in many cases leads to a reduction of the disease or a stablilisation – although, unfortunately there is no guarantee as each person is different, and so the response may be. But in general terms, this combination does extend life.

    You could consider starting it, and if you found the side effects impinged on your life too much, then you could decide to stop.

    As to how long you may have, this is not a question any of us at AMMF can answer for you. Your consultant or CNS (clinical nurse specialist) might be able to give you an idea, but it really does depend on how the disease progresses. However, just as a suggestion, if you need to sort things out why not do it now, then you will know everything is as you want it to be and you can put it out of your mind – and get on with doing the things you want to do, especially with your canine and feline friends …

    Please come back and update us from time to time, and we will always try to help with information if we can.

    Helen x

    PS You might like to repost under the ‘Introductions’ section, as more people will probably see your post there, and come in with responses (or we can move your post for you if you would like us to.)

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