Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Discussions re Oesophageal Cancer...

crystalclear
Posted by

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

mummycarol
Posted by

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

mummycarol xxx

leisha
Posted by

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

Pink Hippo
Posted by

Excellent idea!

 

midnightangler
Posted by

Sounds good to me.

jrc
Posted by

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

leisha
Posted by

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

crystalclear
Posted by

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

_Pansy_
Posted by

Hi crystal

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

nora x

Christine1
Posted by

 

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

pickles
Posted by

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

gg1630
Posted by

Hi Crystal

What would we do without you sorting this out!!!  Im still trying to work my way around this site- im sure ill get used to it in time and im sure it will be loads better its just not liking change.  Not sure where my other posts are but for anyone new this is my story so far:My ex husband was diagnosed with gullet cancer in April of this year aged 41 and we are close as we have 2 daughters.  He was told he had 'a few months'  but is still here and is doing fine at the moment.  In the last 5 months he had had 2 stents fitted, pneumonia and radiotherapy.  Recently he had bouts of being sick and some black bits in it.  They had said it is because his stomach isnt working as fast as it should be - im not sure what that means.  Im assuming its with the speed of digestion but what causes that- im not sure if its how cells work with cancer??

 

sharon1234
Posted by

graet idea crystal, bear with me though till i get ust to this site. x

KarenLL
Posted by

Hi Mary, so so sorry you find yourself on here.  Just be patient, someone will come along soon with some advice.  Can anyone help?

 

crystalclear
Posted by

Hi, can someone point me to Mary please.  Karen, I've looked everywhere and just don't see her.