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  • Sister so unsupportive

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    Caroline jcb

    2 replies

    Hi all I hope I can share this with you all and ask for your help

    5 months ago , after no signs of illness? I was diagnosed with a rare and incurable Cancer Cholangiocarcinoma ... bile duct cancer I’m having chemo as palliative shrink and hold , but prognosis for me is likely short, and I’m dying.

    This has been very difficult for me to get my head around but the worst bit is my twin sister ... she lacks sympathy and empathy and constantly keeps making me feel a nuisance for having this. I’ve been trying to plan some nice things and she just keeps coming up with barriers as to why not .. ie loose bowels Everything I say to her to try and understand how I feel ... she just throws it back at me , that I’m wishing she had it not me !!! 🤦🏼‍♀️🤦🏼‍♀️

    That’s not the case ... of course I wish I did not have it ... but fails to see what I need, how it’s messed with my head and how to help ... it seems all so begrudged. I’m scared and very frightened but she just lives her life almost flaunting what she can do ... and never gives me a thought of how could I do this.

    Latest example as I’m due to go to Chelsea football club on Sunday to the last game of the season. I’m a season ticket holder and I’ve not been all season? because I’ve had loose bowels over the last two days she points out, How would I cope with the journey? I said we can take a bucket and a towel and some toilet roll and she said I can’t cope with that I’m not stopping to let you do that perhaps you don’t need to go then because you need to think how having diarrhoea makes me feel... !!!! Again making about her and how she’s reacting!!

    Views how to handle please And how to stop feeling like I’m always in the wrong

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  • Ross

    Hello Caroline jcb,

     

    Thank you for sharing your experience on the community and I hope that others community members reading this will join in the with the conversation and share their experience with you.

     

    I am sorry to read about your prognosis and the impact that it is having on your relationship with your sister. Many people talk to us about how they are feeling and about difficult family dynamics. If you feel you would benefit from a listening ear and a space to talk about how you are feeling we are here to listen. You can contact us via freephone 0800 090 2309 or continue to message with us here.

     

    You may already be aware of an organisation called the British Liver Trust. They offer information and support to people affected by liver disease including Cholangiocarcinoma. It may be worth contacting them to see they can support yourself or inform you of any support groups that you may be able to make contact with.

     

    Take Care,

     

    Ross.

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  • Reglois

    Edited by Reglois 2 years ago

    Hi Caroline jcb

    Sorry you also have a dire prognostic


    The systemic scleroderma has made me almost doubly incontinent, I don't tell any one and have managed to work out how to cope if an important event comes up.  First I don't eat anything that is not BINDING the day before and very little, take anti diarrhoea  medication and go to the loo first thing and just before going out Yes despite all this I have had several accidents, never go out without a pad on.  Wet wipes are good thing to take too.


    I would have thought a twin would be more understanding sorry this is not the case.  My daughter points out to me that her elderly friend with emphysema trots about and doesn't give in, rests when needs to, if only I had just emphysema. I am not giving in not by a long shot but every one thinks that the oxygen helps, it helps with my blood oxygenation but not to help me breathe but every one says of course oxygen helps you breathe so yes I really understand your frustration, fear and disappointment in family that can't or won't understand.


    Hope you did manage to go to the match without any problems


    Keep fighting   Sue

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