Surviving Oesophageal Cancer

Hi Wendy
Try not to feel sad. This feeling will pass and there is help available in terms of professional counselling if you feel you need it. It’s not so much about not looking inwards, as I believe that is where healing begins, but for me at any rate, it was a matter of looking at other things rather than my illness and recovery. When I dwelt upon my recovery I visualised my wellness. Does that make sense?
As for the info I was given, it was in a small plastic pack that patients are given, so I decided to find out all I could. The knowledge I got was during my recovery period and after one year of talking about it with my Mac nurse, my doctor and other people, and then researching it, I started this thread, and I’ve learned far more here than I did anywhere else, so hopefully you will too. I’m surprised to hear that you no longer have a Mac nurse as mine is still available to me, and as far as I know, everyone still has their Team for ongoing check ups and the Team is always available should you have any ongoing concerns. Anyway Wendy, stay with us for as long as you feel like it and before long you’ll be all singing and dancing, especially on Fridays Lol.
Love Crystal xx

Hi All
I just want to remind everyone on this thread, and for those that had no idea, that I've just read that the Macmillan Share site and the Macmillan What Now community are going to be off-line on Tuesday 15 September and possibly Wednesday 16 September, due to their integration. So we should wake up on the Thursday with a brand new, shiny and very large integrated community. I hope we’ll all meet up there after we’ve found our way around the new site. I believe this Survivors thread will be able to continue within the new community, so as soon as I find out more I’ll let you know. If any of you have any more info, please let us know.
Thanks
Crystal xx

Hi All

I hope you will all find your way back to this thread as I think about you all and realised I missed you all when we went off-line.  The new site will take some getting used to I expect, and on my computer it’s almost impossible to read it no matter what I do, as the text is very pale grey yet the colour is a painful and dazzling fluorescent green.  However, I also see that there is a new oesophageal group, which I may have a look at sometime.

Ben, I hope all is well with you and you’re still out and about.  Let us know what you’ve been up to and when you get dates for treatment. xx

Steve

Thanks for posting the lovely piece of prose just before we went off-line, but it’s disappeared now.  Did you remove it for some reason?  I see that your thread Demon has been migrated successfully.  I hope you’re really well and hope to chat soon. xx

Wendy

How are you doing?  I hope that most days you can feel yourself physically improving and your spirits lifting.  Hope to hear from you soon.  xx

Mick

If you’re looking in, I hope you’re feeling really well and enjoying not having the ‘cancer cloud’ over your head.  I hope you celebrated in some style. Xx

To Everyone looking in, have a good and peaceful weekend.

Love Crystal xx

Hi crystal, I hope you get to read this and i hope i get to read your reply!!!!!!!!!!!! I dont know how i found the thread again or if I will be able to return to it!!!!!!!!!. I hate what they have done to the site. Before i could always find what i wanted but it has taken alot of clicking to arrive here and I am terrified i wont be able to do it again.

I cant find my personal messages and friends so will update our situation on here for now.

 We had a couple of nice days on holl but Ed went downhill and in alot of pain. We went to docs who took blood test and sent us to hospital. They took xrays of his chest, when pain in his gut! so i booked flights home and we got back wed night. Went to hospital here thurs after phoning specialist nurse. Doc there said he could find nothing wrong and only a scan would tell what was going on but he couldnt arrange that till next week. Home again. Ed cant eat as he gets severe pain so has lost half a stone. he wont explain how severe the pain is and the docs dont understand his stiff upper lip attitude so they are not treating him urgently. i think I am going mad. He was on his hands and knees on the floor in spain sweating and gasping. he has not had such a bad attack here as he is not eating for fear of another attack. i am wishing for another attack as i will phone for an ambulance then they will see how it really is. otherwise we wait for scan app and ed continues to loose weight.

One thing doc said it could be is scar tissue but i dont know what that entails. will have to phone nurse again.Hope I return here, love leisha xx

Hi Leisha,  I'm so sorry that Ed is like this and in so much pain.  it's absolutely not right that he should be in that much pain where he's doubled over.  You really must phone the Mac or specialist nurse or your GP as soon as possible.  It's just not a good idea to wait for another attack.  Whatever is causing this needs attention and I'm sure it can be sorted quickly for him.  If it is the scar tissue then the doctors will be able to do something about it.  The more weight he loses obviously the weaker he will become and he needs this strength to ensure proper recovery.   He must know himself that it's better to get this in hand as soon as possible.  What a pity that you had to curtail your holiday, but you did the right thing, so I just hope that Ed will see his doctor soon.

As for finding things on this site, then this thread can be found under the Forums.  If you click on the email tab at the top you will then get an email notifying you when someone posts.  The trouble with this though, is that it sends you the entire message to your email instead of just the link as before.  I hope the others can find their way back too, otherwise it's going to get pretty lonely and isolated here Lol.  Let us know how you get on and what the doctor says.  Love Crystal xx

Hi, you are a love. he is having an attack right now and it started at 6 oclock. he wont let me phone an ambulance as that doc said there was nothing but a scan to explain what is going on and the unit wont be open till monday, same with gp or nurse. I am going to try to contact macmillan help, if I can. love leisha x

update, mon to fri only. no one is supposed to need help at weekends!!!!!!!!

Hi Leisha, you should get him to the A&E department if he won't let you call an ambulance.  It's much, much better to be safe than sorry, especially after such serious surgery and it can't be right that Ed has so much pain.  I'm worrid that he could be doing himself more damage by being in so much pain.  You need to call a doctor and at least describe the symptoms so they can make some kind of assessment.  I'm thinking of you, but i can't understand why Ed is so against getting the help he needs.  Love Crystal xx