Dad diagnosed 4 weeks ago

My dad is 72 and ordinarily fit and healthy, but he was admitted to hospital over the bank holiday weekend in May as he suddenly got jaundice, had very dark urine, couldn’t eat much and he was itching all over. He became very fatigued and was sleeping most of the day. Dad spent two weeks in hospital and after an ultrasound, CT scan and endoscopy was diagnosed with bile duct cancer which has already spread to his pancreas, liver and lymph nodes. We have been told chemo isn’t an option as this is likely to cause organ failure. Dad has had a stent fitted and he has been given ‘a few weeks to short months’. 

When dad initially came out of hospital almost 5 weeks ago he couldn’t eat much and lost weight rapidly, he was still jaundiced and mainly sleeping, even saying a few words was a lot of effort for him. Miraculously over the last few weeks he has improved a great deal, even to a point we’ve been able to go out on little trips. The Macmillan Nurse suggested steroids to boost his appetite (Dexamethasone) which have worked wonders and he is eating normally again. His normal colour has largely returned. I live 3 hours away but I’ve moved in with him. I can work from home for now and I want to be there for him as much as possible. It’s been a huge rollercoaster of emotions and, at the moment, I’m exhausted and scared about what lies ahead. I don’t really know what ‘short months’ means and whether there will be a rapid or slow decline. I guess it’s impossible to predict exactly how long someone may have left but at this point it feels like everything is returning to normal. I’ve cancelled all of my plans for the year and I don’t know whether to give up my flat and life in Bristol. 

  • Hello Alice

    I am sorry to hear about your dad.  Very frightening for you both.  It is so lovely though  that your dad has picked up and is eating.  The little trips you describe will be what you remember with great happiness in years to come.

    your Macmillan Nurse will help you all the way so talk to her.  She can signpost you to all the help out there.  It is lovely of you to move in with your dad and make memories but do not give up your Bristol flat and life . A few short months means that - sadly but this could be your summer of fun - one to remember always.

    The success of the stent and absence of infection seems to govern life expectancy. When your dad stops eating at all and/ or gets an infection requiring hospitalisation you will know it is his time after that it is often a rapid decline. A few weeks then. 

    on a practical level when my husband had a similar diagnosis to your dad we organised his administrative life and his will and he spoke of his funeral etc.  maybe your dad might not want that but it made things easy for me after his death. Equally talking of hospice care or nursing care at home when the time comes would be useful. Financially your dad can claim full attendance allowance which is about £90 weekly and it is granted instantly via a form his doctor completes. We had a great time spending that on special treats.

    For the  moment though just be there and chat and take lots of photos.  My husband greatly enjoyed telling me all about when he was an apprentice when he was a boy and his stories filled his dreams.  

    your dad is so lucky to have you there.  Get some support for yourself  Alice to help you through this and the months to come.  

    thinking of you and your  dad.  

    sending love

    Janey

  • Hello Janey,

    Thank you for your message and brilliant advice, it’s so kind of you and has bought me a lot of comfort. Dad’s MacMillan Nurse is back from her holiday this week so I will definitely talk to her about support, and take all of your advice on board. I hope you have good support around you too.

    The stent didn’t seem to be working initially, but over the last week especially things have improved a lot which we’re so grateful for and did not expect after weeks of persistent deterioration. We’ve been sorting out his wishes, like a will and funeral plans, I love what you said about this being a summer of fun too. I’m trying to plan different things I know he will enjoy, but will not tire him out too much. It really makes me cherish every minute with him. Like your husband he has been enjoying chatting about when he was a boy.

    Thank you again for your kindness. Sending hugs and best wishes. 

    Alice

  • My Mother had cholangiocarcinoma. Your Dad is blessed to have you. Make the most of every day with him. Every day with him is a blessing. Sending love. Thinking of you and your Dad. 

  • Thank you very much. You’re so right - everyday is such a blessing isn’t it. Trying to make the most out of the time while he feels well enough. Sending love and best wishes to you. 

  • Hi Alice,

    My 80 year old Dad was diagnosed with prostate cancer in January, we were then told he had two nodules in his lungs in March.  Then on 17th June he was admitted to A&E, spent 5 days there, and was diagnosed with bile duct cancer, another primary tumour to match the one in his prostate.  It looks like it may have spread to his stomach but we will find out this Friday (1st July).

    I had to reach out to you as I live in Berkshire and have stayed with my parents for the last 2 weeks, so I know how you are feeling.  My Dad is still able to walk so we have been out every day for an hour's walk, plus I've been trying to work as well as support my Mum.  It's been exhausting but I have enjoyed my time with them and wouldn't have it any other way.  I loved the comment about "a summer of fun" and that is how my Dad and I are trying to live each day.  

    I really hope that your Dad continues to improve.  Just wanted to send you some love and let you know that you're not alone.

    Love Juliet

  • Hi Juliet,

    Thank you for your lovely message and I’m so sorry to hear about your dad. I hope Friday goes ok and the cancer hasn’t spread to his stomach. 

    It is exhausting working and trying to manage everything isn’t it. I’m trying not to overthink and to cherish every bit of time we have together. Holding onto the summer of fun thoughts as much as possible. Dad seems so much better than he was. 

    How long do you think you’ll stay with your parents for? I wondered whether to go back to Bristol for a few days as dad’s feeling so much better at the moment, but I’m dreading leaving him so I think I’ll see how things go over the next few weeks. 

    I wish you all the best for Friday, my thoughts are with you.

    Love Alice