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.

Being an efficient and caring carer.

susannabanana
Posted by

The chemotherapy was difficult and quite lonely. Does anyone have advice on the operation after care to make the whole process better for everyone involved. All comments appreciated.

susannabanana
latchbrook
Posted by

Hi

I originally welcomed you to the site and pointed you in the direction of this group for help and support so I'm sorry to see that nobody has felt able to respond to you.

I have found this information about surgery for oesophageal cancer for you and it would appear that there are several different types depending on the stage of the cancer. It might be an idea to start a new post asking for information about the specific operation that your partner is having.

If you still don't get any responses then you could post your question in ask a nurse and one of the specialist cancer nurses will respond within 2 working days. Alternatively you could phone the Macmillan Support Line on 0808 808 0000 and speak to one of the nurses on there. It's free to call and available daily between 8am and 9pm.

Could I also recommend joining the carers only group where you can discuss with others carers tips on making the caring process better. 

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

susannabanana
Posted by

Thank you for your kind response.

susannabanana
Zappaman
Posted by

Hi, could you please clarify is it you or someone you are caring for that's going through this? And what type of surgery is scheduled. I and probably others will then be able to give you advice. Even better if you can think of anything specific you want to know. Ask anything you want me and if I can help I will be glad to. I was diagnosed with T3 N2 M0 staging of adenocarcinoma at the junction of the stomach almost 2 1/2 years ago I had the Ivor Lewis surgery. Now doing well, ask anything good luck and kind regards Frank.

BrentS
Posted by

I’m sorry not to have replied sooner, but sometimes normal things get in the way of things I know I should do...

if I remember correctly you said you were not a good nurse and your husband not a good patient. These are things that few people are naturally good at, so don’t beat yourselves up about being put in this situation through no fault of yours.

A few practical things come to mind regarding post op.

The first is keep notes of what happened when. I kept two note books. One was to do with days in hospital and subsequent appointments - who said what when, and questions to ask. What tablets to take and when. What tubes were removed,when and ‘interesting ‘ stuff like that! A list of useful names and numbers,like specialist nurse, consultants secretary, ward numbers and just people’s names.

The second book was a daily journal during my recovery. How I had slept, what I had eaten and bowel movements!

My wife was very practical when it came to keeping people informed and wrote a single email to friends and family every day during my hospitalisation, so she wasn’t forced to repeat the same thing on the phone time after time.

Visitors, though welcome are tiring, and I always slept after they left, and sometimes while they were there.

The breathing exercises are so important for getting lungs working again. And walking as soon as possible (starting the day after surgery and continuing and increasing daily when home. Sleeping is  good for recovery and it’s easy to measure ones progress through daily distance walked (easy with a pedometer or Fitbit.

Probably the most important thing though, is to ask for and accept hep from friends, neighbours and family. The want to help and you will need it! Anything from cooking a meal, walking the dog or taxi-ing to the hospital. Don’t put on a brave face and say you are fine. It’s bl**dy distressing and it can take its toll, so lean on others.

I hope all this helps.

Counting the days, making every day count.

Brent

susannabanana
Posted by

Thanks for your  response. I'll certainly use the one email a day ploy and the Fitbit option to make things a bit easier all round.

I also have an elderly neighbour who fell recently and needs day to day help. Weirdly, helping her helps me appreciate other peoples' offers so your advice is true. 

Did visitors irritate or comfort you soon after the operation?

Thanks again.

susannabanana
BrentS
Posted by

My best man was waiting for me to wake up the morning after my operation, waiting to tell me I looked bl**dy awful! He knew not to stay long!

I was always pleased to see visitors, especially when they had come the length of the country to see me. But after a 15 minute catch up they were best left to talk among themselves! I didn’t feel irritated, just glad when they left so I could go to sleep!

Counting the days, making every day count.

Brent

jayceeh5
Posted by

Hello Susanna, I will help if I can.  My husband had an oesopaghagectomy 10 years ago so we have been through the whole process, please ask any questions and I will answer them honestly and openly. Things have moved on in that time so I’m sure there are changes but I will do my best to help.  You’re right, it is lonely and isolating, frightening too but there are always positives to be found so please stay strong.

susannabanana
Posted by

Hello, thanks for your interest. The operation is going ahead on Monday and I'm very worried about the possibilities that could go wrong.

I know the surgeons are fantastic and ICU is the best care possible but I still can't sleep for visions of a suffering husband.

We have a friend who has just been through the same process and he's fine. Tells me to take things slowly and calmly.

I know its good advice but I still am scared. Need to get a grip!

susannabanana
BrentS
Posted by

It’s natural to be nervous going into any major surgery but I don’t you need to worry about him suffering because the surgery. Certainly I was never in any pain or discomfort after my op. But my wife of course was the one who was anxious and by no means comfortable while I was recovering. I had it easy!

Counting the days, making every day count.

Brent

jayceeh5
Posted by

This is probably the worst time for you but it’s really good that the op can be done, so that’s a huge positive. I was able to go to the theatre doors and the nurse was so kind to us both - the hours did drag but seeing my husband in ICU afterwards (he initially had a delay with the op while a bed was freed up) was actually a huge relief.  Knowing that everything went well and the tumour had finally been removed was the first step and then he made steady progress, the pain management was very good so try not to worry. Everything about what is going to happen is so alien and you will cope in your own way, just try to keep calm and supportive and hopefully he will be home before too long. Very best wishes and positive thoughts for you both for tomorrow. 

susannabanana
Posted by

Thanks for your kind advice. It means a lot to hear a real story and how you felt at the time. So glad it went well.

I appreciate your thoughtful words and will do my best tomorrow.

susannabanana
Zappaman
Posted by

Hi, I know it can be a worrying time and your mind can run riot with all the things that could go wrong. However if you can look at the positive side, which I know can be hard, the tumour will be out. Your husband won't suffer he will be blissfully unaware of anything. Try picture in your mind everything going well and after about 9 hours of surgery your husband will be taken to the ICU ward. Don't be alarmed by all the tubes and equipment, it is all quite normal for the surgery afterwards. Good luck and kind regards Frank.

jayceeh5
Posted by

I have been thinking about you a lot today and hoping all went as well as possible, you are probably exhausted so I hope you can get some rest.  

susannabanana
Posted by

Thank you - you’re very thoughtful and I sincerely appreciate your kind words. At least I slept a bit last night.

Operation was so long but seemed to go well. Surgeon was pleased so only formal results to follow. My husband seems very well considering ICU but all nurses and care are fantastic.

 Thanks again no doubt I’ll be asking more daft questions  soon x

susannabanana