Discussions re Oesophageal Cancer...

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Hi All

To anyone that might be interested, I’m thinking of starting off a discussion about Surgery and Recovery issues following an oesophagectomy.  I pondered upon a discussion to include everything surrounding oesophageal cancer and then quickly concluded that we would just get overwhelmed and lost within such a vast variety of topics surrounding this cancer.  So, it might be a better idea to create smaller discussions around particular topics such as “Caring”, “Best Practices & Advice”, “Palliative Care” and so on.  Each discussion would not prelude anyone else from joining in if they had something useful to contribute to the Group as a whole.  I think the main reason, and I’m sure we’ll all agree, is that we are here to seek advice, understanding, knowledge and most of all to support and encourage each other through good and not so good times.  So, to get the ball rolling, does anyone else feel that this is a good or not such a good idea for our Group?

Best wishes

Crystal xx

  • FormerMember
    FormerMember

    Hi Crystal: as ever, you are full of good ideas and advice.  I for one think it a brilliant idea.

    mummycarol xxx

  • FormerMember
    FormerMember

    Hi crystal, managed to reply this time! I will try to be helpful but mind elsewhere at the moment, think its a great idea as all your ideas are. They should give you a job! leisha x

  • FormerMember
    FormerMember

    Excellent idea!

     

  • FormerMember
    FormerMember

    Sounds good to me.

  • FormerMember
    FormerMember

    Hi my partner was diagnosed with oesophageal cancer on Thursday he has had a stent fitted and sees oncologist on Monday for palliative treatment as it has spread to his lymph nodes.  It is a large tumour and has attached itself to blood vessels.  Some people have spoken about Tian Xian capsules and a treatment called Carctol - do you know anything about these two different treatments.  I feel so helpless so god knows how my partner (John) feels.  I would like to go for treatment even if they say it would not improve matters but surely you cannot just go on what one person tells you can you?  Sorry I am new to this website and do not know if I am doing the right thing in this particular part of the website.  Mary

  • FormerMember
    FormerMember in reply to FormerMember

    Hi mary, sorry to hear of your partners problems. This will be a frightening time for you. I cannot help with your particular question but there are those who can. This is not the best section. we are all a bit lost as the site has been updated and even regulars are struggling so dont give up as there are fantastic folk on here who can help. If you click on "forums" you will find a post called " surviving Gullet ( osophegus) cancer." That is where you could ask your question. A lady called crystal is very experienced and others who have been there and coped well. Or you could try clicking on my name which will show my friends and clicking on crystals name to leave her a private message(PM).  good luck and I hope you get answers and we talk again soon, love leisha

  • Hi All, thanks for your feedback.  As you'll see, I've set up some working titles for discussion groups.  I didn't want to add too many otherwise we'd be trawling up and down looking for them.  However, by all means add as you see fit.  I hope that we can all join in and help, advise and support where appropriate.  I'm sure that within such a large group as ours, we have loads of experience between us, so we can help those that are new to every aspect of this and are probably scared.  To those people I say, you've come to the right place and hopefully those of us that wear the Tshirts as carers or patients and have the experience, will help you.

    I'll look forward to chatting with some of you.  i hope this system works.  It's all new for all of us, but if it doesn't work well I know things have a habit of evolving so we'll meet and discuss wherever it is.

    All the best, Crystal xx

  • FormerMember
    FormerMember in reply to crystalclear

    Hi crystal

    I think your ideas are going to be really good ,hope I can help also.

    nora x

  • FormerMember
    FormerMember

     

    Hi Crystal.

    Thanks for letting me know about the group and inviting me to join in.  I'm still running around the site like a headless chicken  but it's slowly (Very Slowly) starting to make sense.  At the moment I still feel like I've deserted the old site and I think I've got withdrawal symptoms......ie: Confusion, comfort eating, sleepless nights.......LOL.

    I'm doing well at the moment and I hope you are too.  Actually starting to look forward to Christmas........and maybe even next year.   Booked for a weekend in December to visit the Berlin Christmas Markets and do some sightseeing, If I can keep of the Gluvine.......LOL.

    Wishing you and everyone in the group all the good things in the world.

    Christine

    xxxx

  • FormerMember
    FormerMember

    Hi Crystal...

    Well done for setting all this up.

    I am sure like me lots of our old friends are feeling pretty lost right now, unable to negotiate their way around the 'new site'. I maybe an old stick in the mud but do wish they hadn't changed it this way....I found the old site much easier to negotiate from day one when I accidently stumbled across it whilst looking for answers following Dads diagnosis....Oh well I suppose we will get used to it eventually.

    I am not quite sure if I will be of any use to anyone but I am here and willing to try.

    Good luck

    Paula xxxx