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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.

Surgery 17th January

DRM
Posted by

Hi all

I have my surgery booked for a week today (17th January) and am getting quite apprehensive now. 

I had my pre-op assessment yesterday which blew my mind a bit! Knowing in great detail everything they are going to do you does tend to mess with your head somewhat!

A couple of plus points though, throughout my chemo (FLOT) I managed to put on a stone in weight as I didn't want to end up skin and bone after the surgery. To be honest I ate like a pig the whole way through the chemo! Also the abdomen part of the surgery will be done keyhole as the surgeon who is doing my op is a keyhole specialist, so that should be a little better recovery wise. 

I keep telling myself it will all be OK but I'm not sure I would be human if I wasn't worried in some way. I'm young for this op (46) so I'm hoping that will stand me in good stead. They told me yesterday they were doing the Ivor Lewis as we spoke to an 89 year old!

Here's hoping it all works out!

Deb x

Zappaman
Posted by

Hi Deb, it's quite natural to be apprehensive but you can challenge the thought processes by being positive. I didn't have chemotherapy prior to the Ivor Lewis surgery and I was 57 years old and had lost a lot of weight, I was 57 kilos. You seem to have done really well with the chemotherapy and gained weight, well done. Have you been told to do some deep breathing exercises? It does help with the recovery. I had the surgery in the Royal infirmary Edinburgh, by an excellent surgeon called Mr Couper. He did an excellent job and keyhole surgery in the abdomen area and fitted a feeding tube into my jejunum part of the intestine. That was so I could get nutrition into me via a feeding tube and pump several days after surgery and for about 3 months in total. Take some lip balm with you as you are not allowed to drink and could get cracked lips. Be positive, I think you will do really well, good luck and kind regards Frank.

Anon613
Posted by

Hi  ,

Wishing you all the best for the 17th. 

I had surgery August 2018, and found the chemo worse than the surgery. 

And i'm very impressed and amazed that you managed to put on weight during your chemo! I had FLOT pre and post surgery and I lost about 1.5 stone each cycle. 

Just be positive. My pain management after surgery was good, and I was rarely in pain (despite having a broken rib) which helped my recovery from surgery. Just look forward to being in remission. 

Anon613
Luv Chox
Posted by

Hi Deb

Just wanted to wish you well with your operation, my husband had the open {?] Ivor Lewis on the 7th Oct 2019, he is recovering well,  my only advice would be don't suffer the pain in silence, there are very good pain meds available and these will help with your recovery.  Good luck  XX

The smallest act of kindness is worth more than the greatest intention
BrentS
Posted by

Days have passed since you started this thread and surgery is getting closer, more real perhaps. Maybe you are getting to the stage where you just want it done!

Believe me the days after the surgery are not at all bad. You will be comfortable, be getting well looked after by extremely competent people. In my case I was amazed at the professionalism shown by the nursing staff at such a young age.

Milestones in your recovery will be numerous and almost daily with the removal of some drain, line or tube.

So stay calm and positive and you’ll be fine. We’ll all be thinking of you on Friday.

Counting the days, making every day count.

Brent

DRM
Posted by

Thanks so much for your replies everyone. They are a huge help, thank you. 

Some sound bits of advice, I love the lip balm suggestion, I hadn't thought of that so will definitely take some in with me!

I feel comforted by the comments that's it not necessarily all bad, it's difficult to comprehend what it's going to be like afterwards and it's sometimes hard not to think the worst so to hear some positive comments is great. 

I'm fine most of the time and I am, as suggested, getting to the point where I just want it done so I can move on but every now and then I have a little wobble. I'm definitely a lot more positive than I am negative though, which is good. 

I got on the scales a couple of days ago (I hadn't checked for about a month) and have actually now put on 2 stone!!!!! Oh well, I've enjoyed my last bit of time of pigging out, I know that's all about to change. 

Thanks again for the replies, safety in numbers and all that!

Deb x

KevRover
Posted by

HI Deb,

Just wanted to wish you all the best for Friday, Hope it goes well and I'll be thinking of you! I was a  similar age to yourself when I had my surgery (49) and it was also on a Friday (1st July 2016) at Aintree Hospital in Liverpool; similarly undertaken by a pioneer of keyhole surgery in this field. You will be fine I'm sure and just keep having to remind yourself of the end goal and the healthy life that awaits you, with just a few slight changes to diet etc, certainly in my case.

Will be pleased to hear again from you in due course - best wishes!

Kev.

Silverfox65
Posted by

All the best Deb - we are all rooting for you

You have great support here ,all of whom will be thinking of you and your next step of the Journey 

Zappaman
Posted by

Deb, good luck for tomorrow we'll all be thinking of you and sending you positive thoughts. We will be waiting for an update as soon as you or someone can let us know. Regards Frank.

BrentS
Posted by

You will probably read this in recovery...
Just to let you know we are thinking of you and remembering our feelings the evening before the big op.

Wishing you well for tomorrow.

Counting the days, making every day count.

Brent

DRM
Posted by

Morning all.

Currently in intensive care. Surgeon said it went really well which is great news.  But they didn't do my tummy keyhole so I have a large cut there.

I'm in a fair bit of pain at the moment in my abdominal area, despite having an epidural in. Also my right shoulder is very painful, I had the same after my laparoscopy due to the nerve in my tummy having been messed with.

Goodness knows how I'm going to get out of bed today!

Deb xxx

SCANDSA
Posted by

Morning Deb

Welcome to the other side :-)

im 8 weeks post my MIO....just keep positive, get up and walk no matter how far and do your breathing excersizes and cough regularly ! if you can eat very little of what gets put in front of you, just small amounts  and slowly  :-) , other than that your in great hands.

Ricky.

BrentS
Posted by

Hi Deb

Well done! Welcome back! The first milestone reached. Each tube removed is another milestone and step closer to your going home.

I had forgotten the shoulder pain. At least you know it is referred pain and nothing to do with your shoulder.

Hopefully they will check your epidural and give you something for the pain and make you more comfortable. As Ricky said, keep up with the breathing exercises as they will speed your discharge.

Enjoy your walk today, you’ll have loads of support so there’s no chance of falling over. Just remember your gown is open at the back!

Counting the days, making every day count.

Brent

Zappaman
Posted by

Wow Deb, posting already, my epidural wasn't working so they put me on something else. I was out of it for the first 4 days, thankfully I don't remember much. Don't suffer in silence tell them if you are in pain. Don't worry about the large cut, scars are better than tattoos. Well done for being able to post so soon and keeping us informed. Good luck with your recovery and be patient, kind regards Frank.

DRM
Posted by

Thanks everyone for your replies.

I've been in quite a bit of pain so they've increased the dosage in my epidural.

Doc has just been round and said I'm doing well and wants to get me walking today. That'll be interesting when I'm spaced out on drugs!

Deb xx