Saw the surgeon last Wednesday and they hope to get me in for the OP on 22 or 23 May if not 29th,,, They are trying to swap me around with somebody else for the 22/23rd. Ive started to get pain back,,, i had this pain before the chemo, and was wonderful when chemo started pain went,, I mentioned the pain back, and that i'm taking Paracetamol sometimes as mild pain,,, but a week on and its getting worse, also now i'm having problems with swallowing, i didn't have this before.,,, I asked was i to have the IVOR LEWIS, she said maybe not as that 2 cuts and i may have to have 3? I'm worried as she mentioned a EPIDURAL??? That the tube in my nose gets stitched on, so not come out, ohh boy,, sounds horrid.
I also learnt id be having more chemo/radio therapy after the operation, i had not know that.
Hope they give ideas for food after op and amounts, as was shocked when read here meals the size of a mars bar, wow that is so small, need to get ideas to let husband know what i should, can eat,,, cottage pie, was mentioned, and soups using cream, and chocolate mousse (YUMMY) but ive also read that SUGAR is a no no????
So, im not very confused, would love to hear from those who have got past this and what they ate, and portion size after op,,, pls add to this thread, re ideas, as need get my husband to make for me when i come out of hospital. THANKS
In my humble view you need to relax and calm down. As it's a a lot of information to digest and time is of essence. Best strategy would be to take it as it comes. Planning does help but as you said you have family to help in which case you can leave it to them.
Each person reacts and adjusts differently after surgery.
Food, wedge etc are later things, immediate priority will be to relax and be in good health to go in theatre.
Don't worry about the tubes as there will be plenty of tubes and wires initially. The goal post op is to get rid of plastic one by one. I am waiting for the feeding tube to come off next month.
Hi Take one step at a time+ baby steps to,I know it so horrendous at first,but take it as it comes.I had my op, coming up 10 years the end of this year .Yes things change,with our new piping,and yes still get ups and downs But lm here and enjoying life .And l think lm a very very lucky lady Take Care
I agree with the last 2 replies. You need to try and relax and let the operation happen. I had my op 15 weeks ago and it was hard but the doctors and healthcare team were amazing. The tubes are fine and are removed as you recover. For me the best thing was to have a positive mind set. I have read some awful situations where some people have been unable to have the op so I always considered myself lucky to have the option. Life after is different but you will learn to adjust.
Stay positive and try to go with the flow. I send lots of love.
I am quite relaxed about it,, know i dont have a choice anyway,,, epidural was worrying me a little,, but hayho,, got to be done,,yes ,, feel lucky im getting the op,, as i have a heart condition and was worried they may not have been able to do the operation,,, But going in next week, 22nd op on 23rd,,Think im more worried about hubby at home, make sure he eats properly ,, even though he is a chef,, he is a diabetic and eats rubbish if im not about,,,,
And it sounds like you're not really sure what's happening .
I had my op at St Thomas's and Andrew Davies was the surgeon . Don't worry about the 3 cuts or what the op is called .I have three cuts ,which apparently is a transhiatal esophagectomy . It sounds so terrifying but it's ok ,honestly .
I had such good care ,very comfortable after op . Drugs made me a little hazy and odd - probably a good thing !
Gosh your sentence"That the tube in my nose gets stitched on, " really stood out as that's word for word what they told me , and it completely freaked me out .Was it a specialist nurse intials JT ? I worried SO much about that and I needn't have ,it's one tiny teeny sticht that you won't notice and which dissolves .
Just what is the point of telling you that ,you don't need to know how a [particular tube is connectec }.
I'll private message you my phone nos if you want to chat .
This is a really horrible bit waiting for the op but just get through each day ,one foot in front of the other .The hospital will look after you so well ,I promise you'll be amazed .
Hi,, think was same nurse , as mine also, J.T. Andrew is not doing mine seem mine will be done me a CARA BAKER,, NOW this is worrying me, as not find much about her on google,, where as the guys i got all details on there training, and degrees etc etc,,, FOUND OUT yesterday by looking on the web site, that i am going in ST, THOMAS'S on 22 May, and op on the r 23rd May in afternoon,,,, then got a phone call today,, My nurse there will be a LIZA,,, happy not that JT as cant say i found her that pleasing,
IF ANYONE finds info re cara baker, would be interested to see it,,,
So, will not be on here for a while,,, doubt be able use lappy in hospital, doubt be well enough,,, so watch this space folks,,,if all went well, i should be out around the 1st June,,,
Hi there you seem to have gone into panic mode which is normal towards surgery. A lot of people on here have had adenocarcinoma which is different surgery the ivor Lewis which involves a cut down your shoulder blade under your arm. I also had a cut down my front belly button to ribs. Yes i had an epidural it gets put in and takes seconds before you are put out. Don’t worry the tubes are all inserted during the op. Yes you do have a nose bag as i called it with a stitch to hold it in place. The tubes are drains which 1 by 1 are taken out. The one that may stay in longest is feeding tube which they feed you into your jejonostomy a brown looking milkshake!!
You will start on liquids whilst things are healing move onto purée then soft food before a normal consistency. The dietician should give you a booklet and advise you on stages.
Oh - the epidural . For me and probably same for you ,I had an epidural as well as the general anesethetic .
I think they left the epidural in for a short time after the op to make sure there's no pain .
IYou'll probably see the surgeon Mr Davies the day before the op and also the aenesthetist .
The anesthist was lovely to me .When I went for the op just before you go to sleep I was asked to say what op I was having ( maybe some kind of security thing like they endlessly ask you to repeat name birthday etc ) and I was completely unable to pronounce the word eosphagectomy ,so he jumped in and said it for me and I just nodded !
Take one day at a time. Initially may be one part of the day. I had my IL last sept. You cant take it all in at once. I had epidural as well as general anesthetic. The epidural is then left in for about a week. Yes, you will wake up festooned with tubes but just trust the medical staff. You dont say which hospital but hopefuly you will have physios to get you moving and breathing well. Do do the breathing exercises they are important. Also you should have a dietician to guide you over food. I still cant eat much at a time but can eat most things now. You will probalbly need soft food for a while. Cottage pie seems an obvious one but I couldnt cope with the texture of mince for a long time. Relaxation exercises will help you cope. If you havnt done any before google the hhead space ap. Hope all gos well.
ST,THOMAS'S.. WESTMINSTER, SURGEON CARA BAKER, who not been able to find much info on. maybe on here we can make a list of foods that were eaten after op,, and amounts, to get ideas,, think be soups and rice etc,,
I am under royal derby hospital. The first thing i ate, on the evening of day 8, was soup. Othdr things in hospital were yogurt, weetabix, fish pie, from thr soft food menu, I seem to remember mainly eating mashed potato and gravy in very small quantities. Hospital catering doesnt serve little and often so at each meal, in adfition to what you hope to eat then, have a ypgurt or somthing you can eat later.when i got home it was potato waffle amd egg or toast and marmite.
The op sounds very scary when you read about it. But none of those tubes stay in that long, all have a purpose and when it comes down to it all are much more manageable than they appear while you getting ready for the surgery. I had the Ivor Lewis. Before the surgery the idea of the scars was very difficult to think of but actually when I saw them was quite proud of them! I think of them as my badges of victory! I am very proud of body being able to survive such an op! We all have our fears but I was so well looked after the surgery that I just stopped worrying. As for food we're all different. i asked my husband to make a root vegetable or potato mash and then we could add something like canned tuna to it and make a quick easy meal. The mash can be reheated as needed. Toast was and is still easier to eat than bread. Scrambled eggs fish fingers were also good. I know others who can eat anything!
Best of luck. In a little while you will be able to look back on this and get on with life.
in reply to
Mmm thanks,,, ill eat eggs till come out of my ears,,, not worried about scars,,,was talking hubby yesterday, sating me mash and veggies, thats good , like my veg,,,,, mm fish fingers, yummy, ,, TOAST yes i found that easier to eat than just bread before my chemo and during, and think was dietitain that said was better also.
As some others have mentioned first thing is to try your best to relax and not get pent up.
I know that is easier said than done, I will give you some information on my experience I was 68 when I had my operation and pretty fit.
Don't worry about the epidural, I know it sounds awful, but believe me you will be glad of it post operation. It really does work a treat and once done you will not notice it.
The nose tube is odd, but once again after the operation you will get used to having a tube coming out of your nose which will have a small bag affair on the end of it which draws the excess bile from what's left of your stomach and the esophagus join.
You will also have a couple of drains most likely from either side of your abdomen to drain any fluid which builds up in the abdominal cavity.
And you will have a catheter collecting your urine production.
There will be a series of sticky pads on your chest which will monitor your breathing and heartbeat rhythm.
On the back of one or both of your hands or lower arms you will have a series of small devices which go into your veins so that you can be treated with any necessary drugs and to take blood samples.
You will have another connection into your upper abdomen which goes straight into your intestines to feed you a liquid diet to keep you strong.
And when you first come around you will probably still be linked to a breathing machine through a quite large tube in your mouth and throat.
This is everything that I had when I had my Ivor Lewis and yes it is scary, but all of these connections are only for a couple of weeks at most and it is daunting, but all of us who have had this operation have had this.
I was in St Marys Paddington and was not allowed any liquid at all for seven days, that was the worst bit you could only have a sort of small sponge on a stick to wet the inside of your mouth with strict instructions to not swallow anything.
You won't be allowed to eat very much first off, it will all have to be mashed up and very small portions for a while, things like jelly and soup, but no bread or anything bulky. After a while you will gradually be able to experiment with what you can and can't eat but it does take a long time, I still have dumping episodes regularly.
You will also probably have to take a series of drugs to help your body to adapt to the new plumbing and PPI's to reduce the acid production.
Be prepared to have some awful scars unless you are having the keyhole type surgery. but they do tone down with a bit of time, I have one vertical from my navel to my solar plexis and the shark bite scar which goes from back to front under your arm and a little way across your chest and back almost to your solar plexis.
I think that to be aware of what to expect is a good thing. especially when you are getting this information from a cancer survivor (thirty two months).
I would like to wish you all the very best for your operation and your continued recovery, you will soon discover this is all small steps at a time and a big learning curve, and I hope my frankness doesn't frighten you Good luck and keep us posted.
HI,,THANKS,, Been told ill have a tube in my neck for bloods to be taken and things to be given via these lines,, and she mentioned maybe 2 in neck? Yes and 2 in stomach, and the colostomy bag...
I go in on 22nd May and op on the 23 May... ST,THOAMS,, WESTMINSTER,.
No liquids will be hard, as i already had a problem with dry mouth,, and i also remember a good friend after his op for cancer in Pancreas,, was 10 days no liquids and those sponges,, horrid he said. yvonne
At least your going in prepared, I am surprised they are doing the central line (tubes in the neck). But you are in very good hands at St Thomas's Hospital.
Not too much longer to wait but if possible try to make the most of these days before you go in to have perhaps a little relaxing enjoyment to try to take your mind off of it.
If it was me and I had my time over again I would stuff myself silly with all of the things I love to eat and sink a few pints of beer with it.
For some unknown reason after a lifetime of enjoying a pint with my sons and friends, I can't drink beer anymore it doesn't agree with me.
OK Best Wishes and good luck with everything and if I can be of any help with advice or anything later on don't hesitate to ask.
My husband is 4 years post Ivor Lewis and remember well all he things you have mentioned. I think the way my husband approached it was all these things would reduce discomfort and pain and they really did. I remember visiting him in ICU where he was for one day and night and he was actually sitting in a chair and his relief was the fact that they had removed the cancer - sheer relief ! the scars do tone down but they are a reminder of the great work these surgeons do.. I WISH YOU WELL X
Before the op I was very worried about being thirsty and had heard about these little sponges .
When I first came round these were used to wipe my mouth and offered to suck .
But at St Thomas's where I had my op you are allowed sips of liquid - maybe not until day 2 or 3 .It was a fairly new thing they'd just introduced .
BUT...I wasn't thirsty ! Presumably because you are kept hydrated via a drip and the feeding tube .
I realse now that some of my pre op worries where a kind of way of dealing with the enoromity of it all .I couldn't get my head round the op ( or the cancer ) so I panicked over those things I could get my head round - would I be thirsty /would I be able to scratch an itch /would I have my little bed hat on and hiding my chemo baldness when I woke up .
I found our yesterday mine will be on 23 may, next week,, ill also be in st,thomas's,,, who did your op??? Im getting a CARA BAKER,, who i cant find much info on,, thought was to be one of the guys there, but not,,,
Hi Yvonne - Andrew Davies did mine but he did it in conjunction with ( name escapes me ) v experienced guy now retired .
I think they do the op with 2 surgeons ,but maybe only "credit" one of them if that makes sense .Makes op time quicker .
I found the food at St Thomas's excellent ,they have a kitchen on the same floor and finish off food from the cental kitchen there and prepare stuff .They were very geared up to providing small portions and soft food .They even had a snack trolley offering special snacks - fortified jelly etc .
They were good at catering for individual needs ,the serving staff couldn't have been kinder or more anxious to prepare your tea/porridge whatever to your exact requirements .I swear they would have stirred your tea anticlockwise if it had been important to you .
They have a fridge on the floor where your ward is and ice freely available .( tho you may need to ask )
They brought me fans when they thought I was hot and extra blankets when they thought I was cold .
Try not to worry about a dry mouth ,I was v worried about this - to the extent that I bought ny own supply of little sponges from the internet .Mainly because someone had said they run out of them .
You will be perfectly hydrated and you will be dopey and in a daze from the drugs so you won't be anything like as aware of your body as you normally are .
Dry mouth was aspirational for me to mentally work progressively towards next steps. Like sponges and then 15ml then 30ml, 60ml, every hour or so.and then graduated to soups and further. Worked like carrot trick.
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