Gullet (oesophagus) cancer

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

What to do

No. of entries: 9 | Posted on 30 Mar 2013 12:55 AM

What to do

  • Hi


    I don't know if this is the correct site to post on regarding this issue.  I am due to have an Oesophogogastrectomy imminently.  I saw the anaesthetist yesterday.  I had to do a CPECTS test and then discuss the results using a software tool called 'Risk of Death during Surgery' calculator.  I had the usual pre op stuff done as well.  Because I am diabetic I will be spending some time in ITU/HDU afterwards.  Apparently the diabetes is the biggest obstacle to my recovery over the first few days.  Scared, but keeping it well hidden from my family (I think)

    My issue is this.  I will be some 60 miles away from home. My wife doesn't drive  My wife will have to stay at home to look after our two young children (4 & 8)  She will be able to arrange childcare for some of the time, but not all.  I will miss my family and guide dog so much.  I'm not sure I can cope with this.  We have no other family nearby and I hate the thought of things going wrong and I have no family with me.

    I know the Hospital in Plymouth is a very good hospital, and I feel safer knowing that.  However, these issues are eating away at me and I don't know how to handle this.





  • Julian, I may not be the best person to answer this as I am the wife ( I hate the word widow) of someone whose first diagnosis was advance, terminal, Oesophagus cancer. The people offered the surgery are those who are in an early stage, are strong, and have a great chance of living a normal life afterwards. This is the big chance to kick a very aggressive and usually quickly terminal cancer. Make sure you talk carefully to the surgeon and to your wife. You have a great hurdle to,leap, the recovery will be hard in all of you but you have a chance. There does come a time in Oesophagus cancer where many people say - that is enough chemo / radiotherapy / struggle to eat, and stop to treatment to get a few (hopefully) weeks or months of relative calm with their family ...... but people offered the surgery are not anywhere near there. I do wish you luck with your decision; they are all so hard but there are people on this site who have struggled through the dark days of the op, and are living fulfilling lives with their family. Your wife will find a way to manage; and she needs to ask, ask, ask people for help - there are many out there who will make it easier for her but they do not know what to do. She needs to ask! Good luck, I wish you all the best. Penelope
  • Julian,

    You must be brave and go ahead with the surgery. I had my op three years ago, and I count myself so lucky that  I was offered the chance of surgery. Of course you're scared, but the nurses will be with you all the time, there's one to one nursing in ICU. Your wife will come if she can, but remember she would only be able to visit for a short time , even if she lived next door. And while she's at home with the children you haven't got to worry about them.

    Just go with the flow, relax and let the hospital staff do what they have done hundreds of times before. Trust the experts, but don't be afraid to ask for anything you need. I needed someone to hold my hand, and they did just that!  

    In a few weeks you'll be home again, starting the long road to recovery. Let us know how you got on.

    Best wishes 


  • My nan never gt the choice ov the operation which hink was wrong

  • Hi Jullian

    I know how you feel on thursday I just got told that my gullet has pre cancerous cells in it I came home stunned and very scared I still am freaking out here as I got no advise about what I can do to stop it getting worse or turning into cancer. I am lucky I have my family for the most part near by but like you the thought of anything going and my family not being with me I can't even describe. I will pray for you Julian and your safe recovery xxx

  • My mum never got that option either she died of the same thing.

  • Julian - I can understand you must be dreading this surgery anyway but to do it without the comfort and support of your wife makes it doubly so. I don't think you can overestimate the importance of that support. But here's the thing - you are going through this for the chance of many many more days together and whilst it s going to be tough to feel so alone you are not actually alone as many unfortunate people are and I really do feel for them. I assume you are going to Derriford for your surgery ? My husband had his op there too. They are fantastic with an incredible team of surgeons and I have absolute confidence in them. The ward you will be on is a lovely ward and you will be so well looked after you won't have chance to feel too lonely. My poor husband was there on Christmas Day with no visitors ! They have no problem with you using your phone so you will be able to speak with your wife daily. We choose to go to Derriford for our follow ups although we could now go to Torbay which is much nearer - it is very much "our hospital " now, I also feel for your wife - she must feel helpless - but you don't need to be in the room to "be" with someone. Best if luck to you as a few posts have intimated you are lucky indeed to have the chance of surgery. All the best Lyn
  • Hi


    Thanks everyone for your replies.  They have been really encouraging and I now find myself in a better place.  I feel really bad about feeling worried and sad, when so many of you have much worse scenarios to worry about.

    Thanks again.


    Kindest regards


  • Dear Julian

    I am involved in the OPA (Oesophagastric Patients Association) - their helpline is 0121 704 9860 - and just wanted to let you know that there was one patient who had a gastrectomy and came along to a support meeting a week after his operation.   St Mary's hospital Paddington allowed him off the ward for a while!

    Do not be worried about feeling anxious and apprehensive - loss of health is a bit like grief - and you are entitled to feel normal.   But I know lots of people who have had this or similar surgery, sometimes many years ago, and they have a good quality of life and have seen their children grow up.


    The OPA have a website that you may find helpful