End of the rainbow, or was it the railway?

Met with Doctors at the hospital this morning. Not what I wanted to hear alas. After detailed analysis, they are now certain that the cancer is still in my Oesophagus following surgery. Out of eighteen Lymph Nodes around the stomach removed, eleven were cancerous. I have been told that it is not possible to offer curative treatment & that any further care will be Palliative. I am allergic to Capecitabine (or Xeloda - the X in ECX) so no further Chemo is possible. I am to get regular three onthly checkups, but no treatment will be given unless I develop symptoms. I asked the Doctor if he was talking about decades or years to live, he said years but would not be drawn further. Anyone else in the same position? Would be good to hear some experiences.

8 Replies

  • Fred

    I am so sad to here your news, I also had a very bad reaction to ECX. I had infected lymph nodes and was unable to take the chemo, and I am still here three and a half years later. Fred the truth is they can't give you a definative answer becuase they don't know, so anything else is guesswork, you must try to live your life without constant worry, if not all the hell you have been through has all been for nothing and you still have so much to live for. For me it's not how long I may have but the quality of that life.

    I am rooting for you,


  • Thanks Steve. Still feeling better than Idid before surgery so there is an improvement due to treatment. I am grateful for that. As you say, there are no two patients the same & the Doctors cannot see into a crystal ball.

  • Hi Fredsonic it's five years for me since the first time I had the Big C news, had the op, still have to go to the hospital once a year, and still have all those nasty things that happen with this op, But I look on it as a new life I have started, as the old one mostly has gone, The other day I felt really down after a bad time of sickness, looked out the window to see the lovely yellow and gold leaves on the trees, and it got me back to feeling great to be alive again. A Manly Hug for you , you will beat this, as you did before. Tony.

  • Definitely not the news you would want to hear! It takes time to come to terms with it all.

    Some doctors do not answer that question "How long have I got?" firstly because they think that it sets up expectations and almost becomes a self-fulfilling prophecy, in that the patients will expect more problems and more serious problems sooner than might have been the case. Secondly, what do we do with that information once we have got it?

    The immediate things are how and when (or occasionally whether) to tell family and friends, and how they might react. You have to be strong enough to cope with their reaction. Some people have had a succession of relatives visiting from different parts of the world, in effect to say goodbye whilst they are well enough - and have loved for a long time afterwards.

    I suppose it does concentrate the mind on what is important in life for however long we still have it. And it does tend to make one think that it might be the time to get round to doing all those sorts of things that we always think we will do one day.

    Although cancer has crept in to your body, some things are not ruled by it - Spirit, Courage, Hope, Memories, Friendship, Love, Faith.

  • Really sorry to hear of your news. Alan has said everything I would have said so I will not waffle on. I know from things you have written you are a positive thinker and fighter. Those are the tools you need to face this and give it a fight.

    I have looked down at a rainbow from a plane, they are a complete circle - they have no end.

  • Spoke to the OPA helpline today. Have been advised to seek a second opinion. Have set the wheels in motion. Watch this space...

  • Well, got the second opinion. No change to the first opinion really. He also had the results of my most recent CT scan. Clear evidence of tumours on my Liver. I have an appointment in Newcastle on Thursday. Hopefully some further treatment to help shrink the things.

  • Hi Fred

    My thoughts are with you and your family, I hope you get the answers you need at your appointment today.


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