Ivor Lewis recovery

[Kram1954]

I am due to have Ivor lewis surgery at the end of this month (march). I am interested in how other patients have handled the recovery.

[Julieanne60]

Hi Kram. I hope you are keeping well at the current time. I assume you have completed your chemotherapy and possible radiotherapy treatment. I underwent an Oesophagotomy October 31st 2023, and the next day the physio’s were getting me out of bed for a little walk. I was discharged 10 days after the op and gradually got stronger and able to eat more. I think it was about a month after the op when I was eating most things, just small amounts and chewing very thoroughly. I visited Copenhagen to see my son before the Christmas of 2023 so I must have been feeling quite well.

My overall recovery has been good. I do still have to make sure that I don’t overeat as it’s a very uncomfortable feeling, and the dumping syndrome, which know doubt you have read about, happens rarely now. I prefer to eat and drink separately as I get full up too quickly and I always sleep with a raised pillow.

If there are any specific questions you have, please reach out to the forum, as we all have slightly different stories to tell. Good luck for your operation. Take care, Julie

[fortunatus in reply to Julieanne60]

Having read the posts down the years and recalling the difficult aftermath of my own Ivor Lewis in 2012, I would say the uncomplicated and speed of your recovery was unusual. However, Kram may, and one certainly hopes he will have a similar experience.

[Tanktank]

julieanne60 has made some very good points. The best advice that I can give is to be as fit as you can. Stay active and mobile by walking or exercising everyday. It will help with both your physical, emotional and mental recovery. You are on a curative route for your cancer so I wish you the very best for your recovery.

[Kram1954 in reply to Tanktank]

Cheers Tank, I walk as much as I can already, cheers, Mark

[Mickheinz]

Hi, I had Ivor Lewis 12 years ago, and, I'm glad to say, recovery was quite straight forward. Generally I got tired very quickly for a long time. Following the op. my first challenge was eating. I started on baby food in pouches, then gradually progressed on to " normal " food. The other thing was sleeping. I found , and still do, find the best way to sleep is practically sitting up. This helps prevent acid reflux, which is truly awful. I found the Oesophageal Patients Association website very useful. Good luck and all thr best.

[Kram1954 in reply to Mickheinz]

Cheers, thanks Mickheinz

[Magicwands]

Hi. I had my IL in Sept 23. For me, the biggest things to navigate were fitness, eating and sleeping.

There will almost certainly be times when you feel exhausted, so be kind to yourself. Try to keep as active as possible but acknowledge when you need to stop.

I like cooking so pushed myself to try different textures of food quite quickly. If it was difficult I just stopped and came back to that food maybe a month later. There’s not much I avoid now. Eating little and often is what everyone is advised to do. You will soon learn how much is too much.

You may well experience either early or late dumping. Learn what the triggers are. Both can be well controlled by adjusting either the amount of food, how fast you eat, or what you eat - and avoid drinking immediately before, during or after a meal. I still get it wrong.

Make sure you sleep in a raised position. I use a bed wedge. You will soon learn how ‘raised’ you need to be. Eating a larger meal too near bedtime is a common trigger for reflux.

When in hospital, I found an eye mask and ear plugs indispensable. I listened to a lot of audio books, as I couldn’t concentrate enough to actually read. Noise cancelling headphones are also good as hospital wards are very noisy places. Do all the walking or breathing exercises you are told to do when in hospital, and don’t stop when you get home. They will help your recovery.

I treated my recovery as unpaid work! It felt like a full time job for a while and was a big learning curve. However don’t forget we are all different. Ask for help, take advice, listen to your own body and then see if it works for you. I really hope everything goes well with the surgery and afterwards.

Jules

[Kram1954 in reply to Magicwands]

Thanks Jules, I have ordered one of those bed wedges. Fingers xed. Mark

[LarryLamb69]

Hi Kram, I had mine march last year..so nearly 1 year bang on, as others have mentioned..get mobile as soon as able, breathing exercises and coughing ones( these feel uncomfortable at start)..first couple of days..drinks, jelly and yogurts, moved to 1/2 baked potato with loads of butter by day 3..and progressing after 2 days again, once I could eat more I was discharged..so 6 days for me, after that..eat and maintain weight , before your chemo starts again..(unless you have a bit to loose anyway)..once home, small walks and staying mobile in house helps..stick with exercises as well, I was given spirometry gadget to use..( maintain pressure breathing , so ball stays out..sort of a challenge game I suppose)..chemo side of things got a bit worse due to culalamtive effect of it..just stick with it, as end point is in sight..pain wise the op was not bad for me.. discomfort..yes...pain, not really, just first few days, sleeping may require a bit of a juggle position wise, and reflux could be an issue, so inclined / sitting position may help..and also going forwards in life for this point!..anyway just my points...the very best of luck for op and future!!

[Kram1954 in reply to LarryLamb69]

thanks for your input Larry, I could do with losing a few kilos, but not the way I was planning. Hopefully I don't have to have Chemo. Best of luck in the future. Mark

[FarfallaBach]

Hello there!

Best wishes for your surgery, I hope all goes smoothly throughout.

I had IL Oesophagectomy in April 2024. I was terrified the day before, but the surgery itself went very well.

It’s really important that when the physio team comes round to you in the ICU the next day to try and get you up, go with them and move as much as you can.

I had a complication during my recovery in hospital where I had a collection of fluid on the right side of my chest, and had to have a chest drain inserted the day or two before I should’ve been due to go home (the planned stay was around 10 days) - this kept me in for almost 4 weeks in total and it drove me insane. I’m a terrible patient because I go mad when I can’t be 100% self sufficient and up to the level of mobility etc that I expect myself to be! The walks around the hospital and garden with my physio became my favourite parts of the day, and I used to look forward to them until I could wander on my own as I pleased, because I needed to see something other than the same four walls.

Granted I was 26 years old at the time and had previously otherwise been in good health, so I had that on my side when it came to recovery, but if you follow the advice you’re given, you’ll be just fine. I was driving again 5 weeks post op (almost 2 weeks after returning home) and quickly returned to full independence.

Yet another setback came in July 2024 when I went for post op chemo - I should’ve had 4 sessions, same as pre op, and had the first session which caused such an adverse reaction my oncologist decided to stop the chemo (and explained that essentially it was that or my life, so there was no benefit to continue)

I’m now coming up to 11 months post op, I had a CT scan in September which confirmed NED. I’m working again, swimming regularly and I’m back at the gym getting my strength back up. I’m nowhere near where I used to be but I’m slowly accepting my new normal (arguably the hardest pill to swallow through all of this!)

Best of luck to you - the main advice here is move as much as you can, stay active, follow the advice you’re given and trust the process, and you’ll be fine - albeit the reward doesn’t arrive in the short term!

[Kram1954 in reply to FarfallaBach]

Thanks FarfallaBach, will do

[Singforyoursupper]

Hi Kram,

I have read most of the other replies and won’t reiterate to save you reading more of the same. Much of what they say happened to me to after my surgery 6 years ago. The only thing to add is that I had complications after surgery - pneumonia which wasn’t nice, and a leak at the join in my neck ( my tumour was very high and the join was therefore very tricky. ) This meant being very patient. I was nil by mouth for 6 weeks and was fed intravenously, then by tube and of course had to stay in hospital for weeks. HOWEVER, it was all worth it as I am fine now and am incredibly grateful to the surgeons who looked after me. If there are set backs try to be sanguine about them. I wish you all the very best for your operation and recovery. Ask more questions if you need to!

[Kram1954 in reply to Singforyoursupper]

Thanks Singforyoursupper, I'm think I am prepared for the op. fingers x no complications. Cheers Mark

[Ilfc2022]

Hi Kram1954

I had my IL in July22 at the age of 75. It was delayed because FLOT chemo knocked my heart about so they stopped after 2 sessions. I then did daily walks for 3 months to get fit enough to withstand the op. It obviously worked because the op was successful and I was discharged on day7! Then standard progression back to normal food which is little and often. I didn’t have any post-op chemo and now 3 years in at almost 78 my main symptoms are tiredness after most meals. I sit down for 30 minutes or so after almost every meal . I don’t have much energy, 45mins or so of gardening or diy at a time is about all I can manage, and 3 mile walks about 3 times a week. How much of the fatigue is due to the op and how much to my age? Who knows? But no discomfort, no pain, just tiredness, I can cope with that! Dextrose tablets and crunchie bars help as well. And I have to eat all the high fat stuff everyone loves but tries to avoid to keep my weight up!! So good luck, it’s a bit of a bumpy road for a while but you’ll get there.

[Kram1954]

Sounds like you are doing very well. Good on you llfc2022

[Swimread25]

Hi KramSounds like you are preparing well.

I had my operation almost 7 weeks ago, after 3 rounds of FLOT, then 2 week break-to get married!

My tumour was 30cm long, and wedged close to the heart. It took 14 hours to remove and they had to take sliver of lung as it had spread there, but they got it all out!

Post op, I was in ICU for 2 nights, then a ward for 10 nights. Breathing hurts at first, but you get exercises to do which helps. I was tied up to lots of leak bags/contraptions to enable fluids to come out/get body back to normal.

No food or drink first few days. They installed a jj tube (feeding) in my tummy. After a few days, liquid feed was started. This is easy to manage, the nurses show you how if need to take home.

Unfortunately my neck got infected, seized right up. They put a vacuum leak bag on which helped then other ones

It extended my hospital stay.

But I kept moving! Every day little walk around wards. My surgeon said this is key, and get outside of possible.

My neck has been bit of nightmare, but I'm told this is rare, normally only a week to come right. I had 3 more surgeries, countless leak bags! But it's almost healed now.

I've been on feeding tube and nil by mouth whole time (7 weeks) because even water would disturb the neck wound (I pump water into the tube).

My advice if you have to use a tube is just go with it, it's likely temporary, and gives your body break it needs.

My other wounds are almost healed, I'm walking 40 min to hour each day, off all painkillers.

Looking at 4 more FLOT and radiotherapy as preventative measure, but all the visible cancer is out.

I'm 44 female so younger, but there's amazing stories on here. The nurses are angels! Just accept the help as initially you won't be able to move much.

Sending best wishes and strength to you for your operation-you will be fine 🙂