Sad new year 2017

Had a phone conversation with Dad's consultant yesterday. I wanted to clarify in my mind where we actually are with his cll. Sadly, my fears have been confirmed...he is now end stage, now needing blood transfusions every 2/3 weeks, this is what's keeping him alive, but Dr expects he will be unable to cope with these constant visits to hospital, hooked up for 7 hours, plus a 4weekly visit for his immunoglobulin therapy. He's still so happy, and I realise he will lose this fight soon, but doesn't stop this feeling of dread. Dr has assured me this disease should not cause him pain, my main worry, I suppose I just want him not to suffer.

16 Replies

oldestnewest
  • Hi,

    So sorry for the news. Two years ago my father started blood transfusions and we thought every holiday would be the last. He is now reaching the end but still is able to go out once or twice a day and his pain is minimal. I don't know how long your dad will last but enjoy the time and know while he is here there is no definitive timetable. Take good care of yourself and have a blessed new year. Hugs

  • Thank you. His Dr told me 3 years he had 6 months max, so he has defied that prognosis! But this time things have noticeably progressed. He is incredibly frail, only leaves his flat for hospital visits, but lives spending his days watching TV. Loves his sports and still watches news programmes, so we still have things to chat about.

  • Hi there FWD,

    I'm so sorry to hear this and whilst you must have suspected this was the case at his advanced age, it's still hard to accept. I'm sure your dad will continue with his therapies for as long as he feels able or as long as they're still proving effective. The important thing is he still feels positive and happy and that's such an important thing for a man of his age. He also has the most important thing of all, the loving support of his family which is priceless. Of course you don't want him to suffer and at 87 in dementia care, I feel the same way about my mum. The level of care your father is receiving suggests to me he has caring doctors who wouldn't let that happen.

    My thoughts are with you and your dad and we will be here to offer any support and advice you need. I hope he will still be fighting the good fight for a very long time to come!

    Warm best wishes,

    Newdawn

  • I agree, the care my father has received, particularly over the last 3 years, has been excellent. Our NHS gets such awful criticism, but everything that could be done has been made available to him, regardless of his age. His cll Dr has assured me that while he wants to continue, he can have both transfusions and immunoglobulin therapy. We are so lucky that he can fight this disease without any worries about the financial implications. This is not a bad place to live!

  • I am so sorry for how you are feeling right now. when cancer hits an individual, it is the entire family who is affected, not just the one afflicted. My son had a breakdown in the middle of the night the day we all went to meet and get the SLL diagnosis from my specialist. He is also in the healthcare field - and a very sensitive young man. i hope there is some solace for you to know your Dad is feeling happy - that says so much i think! I'm not sure if you're the son/daughter - but he is lucky to have someone so caring as you are.

    I hope you have some support on how you are dealing with your Father's affliction. it is important for you to have someone you can speak to about this.

    i am new here and i already feel very glad there is this amazing support from what we can coin as our internet CLL family. Please know you and your Dad are in our thoughts!

    blessings and peace

    Lisa

  • I'm dad's eldest daughter, my sister is close by but sadly can't drive, and both she and I have had knee replacements this summer, she's now waiting for her 2nd knee to be done, so isn't physically good ATM. My brother lives down south but flies up every few weeks, so I'm not alone. My husband and I see to dad's needs, luckily he has carers 3 times a day, hopefully to increase to 4 times, he can afford a weekly cleaner, his cll Dr has been in touch with our local hospice, I'm waiting on a call next week, he will have a designated palliative care nurse, who will visit soon, so everything is being done in advance, which is incredibly helpful to me. Of course I don't want him to suffer, I need to tell myself that everything is being done that he won't.

  • So sad FWD, be proud of him, thankful for NHS and treasure the time together, God Bless

    Marc

  • So very sorry...

  • Hi fightingwithdad

    These are precious days, hearts swell with love and also pain when our parents travel on the inevitable path we all must take.

    So pleased for you that all that can be done is being done, your Dad is blessed to have you.

    Hospice carers and the hospice if he goes there, will ensure his comfort and give you some peace of mind. A hard time to go through but I hope you can take comfort from knowing you will have done all you can.

    Sending warm hugs

    Bubnjay1

  • Thank you so much.

  • It's all been said. So sad for you all. Just reading your post had made me teary.

    Stay strong. Agree with your words on the NHS.

    Thinking of you all.

    Sue

  • Thank you.

  • Your dad is happy and in no pain - and above all else he knows he is loved. It's the greatest gift anyone can give to another - and the most treasured.

    May you all experience peace during the coming weeks and months.

  • Thank you.

  • Hi FightingwithDad,

    I was very moved as I read your post... I tried to tell my hubby about it, but couldn't say the words- I was getting all choked up...

    It's great that he's happy - he's enjoying watching TV, takes an interest in things, he's not in pain, he's got a loving family, the NHS are not giving up on him in spite of his advanced age, his needs are being met.

    So much to be grateful for, but he's your Dad and you don't want to lose him... He's always been there for you, and now you want to be there for him, and help this final stage be as smooth as possible. I can understand all the uncertainty and dread that comes with that... It's great that a palliative care nurse is going to be assigned to him - I'm sure that will be a great help for him and support for you. (As you say, our NHS is something very special. )

    Nothing I can say that folk haven't already said, but wanted to let you know I've been thinking of you and your Dad.

    Hugs, prayers and tears from Sheffield,

    Paula

  • Thank you so much. Means so much to me that others understand....

You may also like...