UK support group?

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  • August 20, 2013 at 8:34 pm #74728
    lainy
    Spectator

    Dear Sandie, your fabulous cheering section is already in place and ready to wail! You bet Miracles happen and I have seen some here! Wishing you the very best and can’t wait to hear about your meeting in October. Have all the moments you want be they blonde, red or brown. Heck, I will throw myself in there too,,,,Silver.

    August 20, 2013 at 8:20 pm #74727
    sandie-in-france
    Member

    Thank you special friends for your hugs, support and love, soooo much appreciated. Scans and tests to follow, seeing my new super amazing prof again on the 15th October when decisions will be made … or not … hopefully lots of prayers and love will shrink tumours into insignificance. Miracles do happen … I know they can, I’m still here so … BECAUSE I CAN. Super positive, still giggling and still having loveable blonde moments xxxx

    August 20, 2013 at 5:53 pm #74726
    gavin
    Moderator

    Fingers crossed here for some good news for you too Sandie!

    August 19, 2013 at 8:21 pm #74725
    clarem
    Spectator

    Good luck Sandie.

    August 19, 2013 at 6:47 pm #74724
    lainy
    Spectator

    Hi Sandie, you move around, girl. I have everything crossed for tomorrow and hope you love your new ONC! Please let us know what happens.

    August 19, 2013 at 3:28 pm #74723
    marions
    Moderator

    Sandie….we are right with you; can you feel it?
    Hugs,
    Marion

    August 19, 2013 at 2:38 pm #74722
    kris00j
    Spectator

    Sandie, praying for a positive meeting tomorrow!

    August 19, 2013 at 8:25 am #74721
    sandie-in-france
    Member

    Marion … I’m now permanently in the UK and seeing a prof of onc tomorrow in Manchester (I’m praying for good news).

    August 17, 2013 at 6:57 am #74720
    gavin
    Moderator

    The more the merrier indeed Sandie! :)

    August 17, 2013 at 12:09 am #74719
    marions
    Moderator

    Sandie….are you back in the UK?
    Hugs,
    Marion

    August 16, 2013 at 10:30 pm #74718
    sandie-in-france
    Member

    Hi Jules

    I’m happy to join any support group in the uk … the more the merrier.

    Sandie

    August 16, 2013 at 6:58 pm #74717
    gavin
    Moderator

    Hi Jules,

    Yep I sure know what that rushing around is like between appointments, we can all relate to that! And for sure, your mums health is definitely the priority right now for you. I hope that you are able to take some time for yourself as well though as your health is important also.

    I had a good look around and couldn’t find any other purely CC related face to face support groups unfortunately. I also got in touch with Helen from AMMF and she didn’t know of any others in the UK outside of the Aintree group. She said she would let me know if she heard of any that would be of interest to all of us and if I hear more I’ll post the details here.

    Next time you are back home then have a look out of your garden at your folks house and you’ll see Clare and I waving at you! A UK meet up would be a great thing someday if we could sort one out.

    Best wishes to you and your mum,

    Gavin

    August 16, 2013 at 11:36 am #74716
    jules1982
    Member

    Hi all,

    Thanks so much for all of your replies. I haven’t had time to properly look in to the links that you’ve sent yet as we’re rushing around from appointment to appointment at the moment – i’m sure you know how it is! It’s hard to have to go to work when all of this is going on. Looking after mum’s health seems to be a full-time job in itself and it is definitely my priority at the moment. I will have a good look at the links you sent, later on today.

    Re locations, yes, we are spread out a bit, although my folks actually live up in Northumberland and we can practically see Scotland from our back garden, so not that far away from Gavin and Clare when i’m back up home! :)

    Jules

    August 16, 2013 at 5:44 am #74715
    gavin
    Moderator

    In case anyone is interested in establishing a CC support group there is a great webinar that Mark made for us all a while ago. Well worth watching and it can be found here –

    http://www.cholangiocarcinoma.org/media.htm

    Gavin

    August 15, 2013 at 9:16 pm #74714
    gavin
    Moderator

    Hi Jules,

    Support groups are a great idea and many people would get so much out of them, especially in face to face settings. I’d be up for a UK meeting sometime if we could all do one, but I guess that locations etc would be a bit of a hinderance to us since we are so spread throughout the UK.

    Maggies run support groups and I know that they have a centre in Oxford. Here is a link to their Oxford centre in case you haven’t heard of them –

    http://www.maggiescentres.org/oxford/introduction.html

    Timetable for the Oxford groups –

    http://www.maggiescentres.org/oxford/timetable.html

    I know that in the Dundee centre they run a GI support group but they don’t seem to do one as of yet in Oxford. Perhaps you could see if they plan on starting one, or even suggest it. I’ve had some experiences with Maggies and they do great work there for patients, carers, family members etc.

    As to specific CC support groups, I know that Aintree launched one in June of this year and Helen went to speak to it at their opening. Here is a link –

    http://www.ammf.org.uk/2013/07/02/discovering-the-aintree-attitude/

    Not too sure about any other specific CC face to face groups but I’ll see what I can find out and get back to you. And of course, you have all of us here as well!

    Best wishes,

    Gavin

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