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  • Feeling isolated

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    Reglois

    3 replies

    Hi

    Last May I was diagnosed with 4 lung conditions, yes greedy I know lol, three of them are progressive and there is no treatment.  This May I was put on oxygen. Now that it is obvious I am ill friends are leaving or even making excuses or down right lying, I am NOT contagious and they know that. I live abroad so now feel extremely isolated, don't speak to people from one day to the next unless I make the effort to see them.  My husband died of lung problems too, we have both been poisoned by zinc chloride, now used in chemical warfare.  I am determined to beat the dire prognosis but feeling low is not helping, hate taking tablets so that isn't an option.  Sorry for the moan, just need some one that understands.

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  • Clare

    Hello Reglois,

     

    Welcome to the Marie Curie community, we hope you will find it a supportive space to talk about how you are feeling.

     

    We’re sorry to hear about the loss of your husband and to read that you have been diagnosed with similar progressive lung conditions. It can be common for people to react to someone’s illness in different ways, unfortunately not everyone will respond to this news in a way that you would hope or expect from them. It’s natural though to want to speak about what you are going through and how you’re feeling. Please don’t feel that you need to apologise, this is exactly what our online community is for.   


    In addition to the community our Support Line is here to offer information and a listening ear. If you would like to talk to us about anything you’re experiencing, we can be contacted in real time through our online chat function here: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/using-online-chat .

     

    Best wishes,

     

    Clare - Support Line Team


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  • Reglois

    Edited by Reglois 1 year ago

    Chat Line Is that allowed as I live abroad?


     My husband died within a couple of months as his condition turned into small cell lung cancer, I run the same risk,  so far I have made it to 18 months from a 1 to 3 year diagnosis.  Maybe I are not being that fair on friends as they say that the doctors always exaggerate and from what they have seen on line I have at least 9 years!!  there is very very little information on CPFE with bronchiectasis and systemic scleroderma, in fact I can't find any at all about that combination.  Have been more or less dismissed by doctors here, they are not used to patients knowing much or researching and as I refused to go on to the usual treatment for Idiopathic Pulmonary Fibrosis, I HAVEN'T got that, and what little info I did find it said it was dangerous for some one with CPFE to be treated with inhalers and Esbriet or Orfev as the latter had little to no effect and had horrific side effects, don't feel too bad so why take something that will change that bit and not work on the other bit. The inhaler warning is so true, put on Symbicort and it nearly killed me really messed up my lungs (hence on oxygen since) that is what lead to my doing a real investigation.


    I really would like to chat to some one that doesn't judge or think I am exaggerating or making a mountain out of a mole hill.

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  • Clare

    Hi Reglois,

     

    We have had other people who now live abroad use our online chat. Like you they have felt isolated and needing a safe space where they can talk without worrying that they may be being judged. It’s not easy when friends and family have a different understanding of your illness and how it affects you day to day.

     

    You mention that you have very little information on the combination of lung conditions you have. If you have not already done so then you may want to see what information the British Lung Foundation may have. They can be contacted by email here - https://www.blf.org.uk/support-for-you/helpline

     

    Looking forward to chatting with you further whether here on the community or on online chat,

     

    Clare - Support Line Team


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