Oesophagectomy surgery and recovery. Patient/partner experience please

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Hello Forum members. My wife will undergoing oesophagectomy this week for GOJ adenocarcinoma which is probably at Stage 3.

I have read lots of leaflets which deal with the procedure, recovery and prognosis. She will be having 2 stage Ivor Lewis surgery.

What would be helpful to know is the actual experience of patients and their partners. If you are able to provide some experience information I would be very grateful.

Many thanks

  • Hope all goes well for both of you this week. It is a long day to go through. I think the answers to your questions will be found in the profiles and story threads of  existing contributors. There are a lot of post op stories in there which should help you.

  • Hi Anon 

    I underwent this same operation on the 24th of September at Gloucestershire Royal Hospital. The procedure took around 8 hours which I think is probably around average. I did okay after the operation and spent three nights in the ICU where I felt very safe and supported. The physio's will get you out of bed the day after the op (they're like the Gestapo only worse!! LoL) but it's important to do as pulmonary problems are the most prevalent after surgery so getting the heart and lungs working is essential. I then went to a normal ward but still felt in very safe hands. I came off the drip feed and onto a puree diet after a few more days which looks disgusting but actually tastes fine. A very young zealous doctor wanted to discharge me after 7 days but that was quickly nipped in the bud by his older and wiser colleagues! I'm glad as I did have a few issues with my chest getting clogged up with mucus which was alleviated by using a nebulizer. I was discharged yesterday (Day 11) and am back home starting my recovery process. In all honesty bearing in mind the major nature of the operation I feel it hasn't been as traumatic as I anticipated. Anyone who gets the lifeline of having the option of this operation is very fortunate imo as only around 23% are suitable for one reason or another. Keep us all posted as to how she gets on.

    Good luck

    Anthony 

  • Thanks Anthony, very kind of you to reply and I wish you every good wish with your recovery at home

  • Hello Anon

    It’s a long time since my husband’s oesophagectomy (2009) but the day is imprinted on my memory. He came through the surgery well and he lives a relatively normal life.

    It will be a difficult day for you, lots of waiting, hopefully all will go well and your wife will soon be home recovering.

    If you have any specific questions please ask, there’s so much to think about.

    Best wishes to you both.

  • Hi anon, 

    I’m almost 7 weeks post op, the operation I had was fully robotic Ivor Lewis, I was under for 9 hours and I came round 7 minutes after I’d been moved back to the ward. My hospital stay was 13 days, 8 of those days was on the ICU ward 3 on a step down ward from ICU and the last 2 days was on a general ward. When I moved onto the step down ward they discovered I had caught pneumonia from the operation and that’s why I was ‘tachycardic’ as they was saying from the start. My epidural failed twice which left me in quite a lot of pain for days on end until they got my pain relief correct, I went from morphine and ketamine which did nothing no matter the dose too a stronger dose of morphine and a pain relief drug called gabapentin which seemed to ease off the pain. The IV paracetamol I found brilliant too, it took the edge off the little niggles.

    I never had a JEJ tube fitted, i had lost 8kg in my hospital stay but I have now put some weight back on. Eating is generally okay some foods get stuck at the join if they’re dense but they go down okay with the aid of a drink (I am currently waiting for dilation). If I was todo this all over again I’d definitely opt for the JEJ tube. 

    But 7 weeks on, I can fairly say that I can almost eat pretty much everything at around 75% of portions depending on what it is (had my first fillet steak last night since the operation). Dumping syndrome hits you quite hard sometimes but it’s worth noting what’s caused it to avoid or minimise the intake of whatever the perpetrator is! One thing I have found is when I pickup a cold I have lots of phlegm which my stomach doesn’t seem to know what to do with it causing a lot of nausea and bringing up of said phlegm. For reference I am 29 years old which id imagine has helped aid recovery. 

    I think mentally it’s been harder on my wife than myself, my wife is a big worrier and having an almost 2 year old thinking of the future is a big worry for her which I can imagine is the same for any partner. But my Histology was very good which has eased up the worry a little bit but who knows what the future holds, Cancer is very nasty! The hospital has kindly offered myself and my wife counselling, if it’s needed why not take the opportunity!

    I hope your wife’s operation goes well and she makes a speedy recovery, all the best Anon123!

  • Hello Anon123

    You will have already noticed we all have a different story to tell, all in all, your wife will be very well looked after, for you it will be a long day. My son spent the day with my husband, my husband chose to work from home.

    I am 65, I was T3 N2, M0 at diagnosis. I was terrified regarding the operation and afterwards I didn’t need to be, from the minute your wife arrives at the theater she will be swooped in care by the expert's. 

    I had Ivor Lewis robotic, you will be told there are lots of tubes afterwards, I imagined the Queen Borg (I’m a Star Trek fan) the way I looked at it that if the tubes were all in place the nasty blob was gone. I did not have a j tube for feeding fitted, I was allowed sips of water once on ICU ward, the next morning I was helped out of bed and walked the length of the ward. Phew, I just got out onto the chair the next day and kept falling asleep with my visitors. The tubes start to come out day by day, pain relief is in abundance, I had an epidural left in situ for 4 days. Trying to sleep is a tough one as there is lots going on, and sounds going off. My ear pods and audio books were a god send, even if I did sleep through a couple of chapters. On my 3rd day I was walking the ward again, with support. I was then transferred to the high care ward. Shakes were given to me and a cuppa, on the 4th day I did two walks and started on the soft food which looked yuk but tasted ok. On the 5th day the physio got me to do a stair climb, I did two and on the 6th day I went home. I consider myself very fortunate that I had no complications. I stayed positive and very grateful that I could have the operation. 
    I felt some guilt because I quickly had to except I could not do much, it is a major op and wipes you out, I am very independent or was I should say. Paul will say he felt helpless, he wanted to do it all for me but obviously couldn’t so helping and doing things I had just always done helped him. So it’s a learning curve, see saw and lots of talking. 
    I am 7 months post Op. and all is good, a few blips but nothing that doesn’t sort its self out. 

    There some fantastic journeys on here, just search them out with key words or ask.

    All the best, we will be thinking of you both and let us know how your wife gets on. 

    I had my operation at QA in Portsmouth, fantastic team, the best.

    Best wishes Jennie SparklesSunflower

  • Good to hear you're on the road to recovery Anthony.