Chronic progressive sarcoidosis

Hi everyone,

Hope you're all well, got some news this morning about my illness which wasn't entirely surprising, my consultant phoned after I asked for information and confirmed what I suspected for a while that I have between 2 to 5 years left (not in so many words but that was the gist of it). My problem is do I tell my son who's 46, I'm 64 and a widow but have wonderful family and friends who support me. Let me know what you think ta

Liz x

16 Replies

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  • So very sorry to hear your news. I always think in these situations that honesty is the best policy. I would be straight with your son and tell him, this will give him time to prepare as well as you and the chance to make the most of your time together. My Dad kept secret from us how seriously ill he was I know he did it to protect us but I wish I had known sooner. Good luck in your decision and God bless. Best wishes Julie xxxxxxx

  • Thanks Julie xx

  • There is a book titled handbook for mortals which might help you both and indeed honesty is the best policy.

    Good luck Chris

  • Thanks Chris x

  • Like Lovemelovemydogs, I too am sorry about your news, and I have to agree about being honest with your son. You need your family and friends at a time like this.

    And when you've done that, forget about it, and take each day as it comes. Live for today, tomorrow will take care of itself! Take care x x

  • Good advice nowheeze cheers for that

    Liz xx

  • I am so sorry to hear your news, that must have been very difficult to hear and very difficult to come to terms with.

    I think that you should tell your son. He needs to know so that he can have the opportunity to support you. I do think you should ring the BLF helpline - they might be able to give you some practical advise.

    Lots of luck and as nowheeze says - enjoy each day as it comes. Look after yourself. TAD xx

  • Thanks TAD strangely enough probably because I suspected as much and it's a few years away I'm coping well. Thanks again

    Liz xxx

  • Hi Limbobimbo (love that name ;) )

    Please tell your son then the choice will be his on how he wants to deal with you and your illness, maybe that is a bit of a strange statement but sometimes (and this I am guilty of) we try to protect our loved ones only for it to backfire and we end up hurting them without meaning too.

    Whatever you decide though don't put a time on how long you may have because to be honest you will drive yourself mad just live for everyday and do not put off anything you can afford to do or are well enough to do because non of us know how long :)

    Keep Breathing :D

    Janet xx

  • Good advice jandan thanks x

  • Hiya - just as a thought and in case you were not aware, have you tried :

    sila.org.uk/

    They have a discussion forum which may be of some help to you. :)

  • Thanks scrobbitty x

  • Honesty everytime

    KOTC

  • Thanks KOTC x

  • Very good advice from scrobbitty as sila are a very good site to be part of. Please join. So sorry to hear of such awful news but do tell your family as soon as you can. Also, how do they know how long you have? Pete has chronic sarcoidosis that is supposed to be burnt out now but nobody truly knows. He has had this awful disease for 22 years now. There is always hope but do join sila and chat to them on there too. Come back and let us know how things go and wishing you all the very best. I am Pete's wife and carer by the way and know how sarc affects him. Take care and lots of love. xxxxx

  • Thanks sassy59 x

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