Hello asansum,

It does sound like it has been a real rollercoaster for you and I hope you get some answers soon to all your questions. 

You might like to give our nurses a call and have a chat about any questions you have or ask them for advice on what to ask the oncologist on the 13th of January. Our nurses are not back in the office until Monday 29th December now due to the Christmas break.From Monday next week they will be available Monday to Friday 9am to 5pm on freephone 0808 800 4040 (although they will be closed on New Year's Day).

Hopefully others with experience of oesophagus cancer will pick up your post soon and have some suggestions for you. Many people here will know only too well how long the wait can feel - especially during this festive period when time seems to come to a standstill.

Best wishes and fingers crossed you get some proper answers soon, 

Lucie, Cancer Chat moderator

Hi Asansum,

Sorry to hear that you're going such a hard time - bad enough dealing with a diagnosis without having your hopes and expectations raised and then dashed again.

I was diagnosed with stage 4 oesophageal cancer in late 2013 and have an idea of what you must be going through. If you live in the UK, you should have been given a lead nurse at the hospital to contact if you have any questions. Failing that you could have a chat with your GP.

Have they given you a reason why surgery has been ruled out? In my case it was because the primary had grown around my aorta and I had secondaries. I went onto the EOX chemo regime within 2 or 3 weeks of diagnosis and luckily responded well to it.

Please don't hesitate to ask any questions on here - you must have hundreds.

Good luck for the 13th!

Dave

I second what Dave says. The 13th must seem ages away. Here you can feel among friends who know the journey. So, you can fire away! Mean times - I hope you had a Good Christmas and were able to put it out of your mind at least for a while. 

All the very best - 

Steven

Yes, the 13th does seem so far away. When I spoke to the 2nd nurse, which was only 2 days after the 1st one. She told me that there was extensive growth into nymph lodes (didn't think to ask what extensive meant) and this slight problem at one point on spine, it has not spread to any other organ.

2 days ago I was contemplating a year of ***, but coming out at the end of it. Now all I can think about is how long have I got, how am I going to tell my mothet, son and step daughter. They sre all on a high as they know about my year of ***, and I was going to come out better at yhe end of it.

I cant understand how my allocated nurse can relay a positive message from one MDT and then when I speak to her colleague,  because she is not at work that day, she reports something completely different from a different MDT at a different hospital. 

Hi,

It sounds like there's been a slightly different interpretation of the same information by the two MDTs. I'm told that interpreting scans isn't an exact science and that there's often an element of personal experience and judgement brought to play. Not great for us patients, especially when we hear the more positive interpretation first. I would recommend asking straight up why one team thinks it is inoperable and the other doesn't. Surgery is always a matter of balancing risk and benefit, but you have a right to play a big part in making that decision and you are entitled to a second opinion if you disagree after hearing all the facts.

The spine is a common site for mets and CT scans are used to spot them at an early stage, as are the lymph nodes. With luck the chemo will stop both types in their tracks. 

More easily said than done, but I hope that you're somehow able to put the worry to one side and enjoy what's left of Christmas and the New Year. 

Best wishes

Dave

Hi,

Thanks for all your replies, especially davek.

I have read your profile,  and found that it was encouraging.

I have had a wonderful partner for the last 10 years who has been very supportive, but her husband died from cancer 15 years ago.

Unfortunately, she is getting frustrated with my pessimism, as I've always been an optomistic. 

She keeps asking questions and although we are communicating, there are some things I just can't explain to her, as I don't even understand what I'm thinking myself.

Yesterday, I opened the fridge and a bottle fell out and smashed, Sue's future daughter in law cleared it up and I just froze, she just said doesnt matter but I felt like the old grandad who has to be tolerated at Christmas 

.My swallowing problem. is, and always has been a minor problem only evident a couple of days a week, I'm fit, not loosing weight, eating  well, so why is this happening?

I haven't smoked for 30 years, virtually don't drink and survived nearly 20 years as a miner.

Why? Is always a bit of a mystery to me too. 

There are obvious factors (smoking, family history, exposure to asbestos or ionising radiation etc.) which can stack the odds against an individual but over the past year I've come to the conclusion that there is also a random element in there too. 

It will take a while to get your head around things, and the waiting for treatment to begin is a b*gg3r, but if you're normally an optimist that part of your character will come to the surface.

Bye for now
Dave

Had  a bad night, Sue got up in the middle of he night and slept on sofa.

We ended up rowing, because she thinks I've  given up.

Although I am desperate to live, feel that its all out of my control and maybe I have given up.

She's demanding I cheer up, but I really don't know how to.  She's gone to Weightwatchers, and when she comes back we are going for a long walk, but all I want to do is curl up under the bedclothes.

I am dreading, and trying to find the couragr to tell my step daughter, hopefully,  if I don't  crack up, just teling her thrre is a smakl setback, but everything is going to be ok. Sue says she cant cope with this and is threatening to talk to my step daughter herself.

We are both hurting each other and I don't know the way out.

You can't just cheer up, but you can get dressed, walk in the snow and talk to your step-daughter about what's wrong. You know yourself that the longer you leave it, the harder it will be and she is probably imagining the worst already if there's an atmosphere between you and her Mum.