Week 6+ post Ivor Lewis

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Hi, this is my first post here.

My husband's dad and grandad both died of cancer of the oesophagus so I guess my husband was on the alert for it and sure enough it was diagnosed in Feb. There were a flurry of tests/scans, 4 rounds of FLOT then a planned Ivor Lewis on 28th July.

He is still in hospital.

I think nearly every complication possible, he's had it, but not helped by some weird decisions by the hospital.

I'm so frustrated and worn out from being scared for this length of time. The hospital is a daily 3 hour round trip for me and we have no family nearby.

An AL leak developed at week 4. A big one 11mm in diameter. Then another appeared along with necrotic tissue.

He's had pneumonia twice, he's had 2x negative pressure stents, then they removed those and said the holes would heal on their own?!

I can never find anyone to tell me anything. My husband has a delirium so is confused a lot of the time and has terrible night terrors.

Some days he seems terrible and is tearful and other days ok. He refuses to watch tv, saying he didn't go in to hospital to watch tv but just sits there all day.

I've tried to go in every day sometime there for 10 hours. Yesterday was my first day off.

I wash him, dress him, take him for a spin around the corridors then put him back in his PJs. Then take his washing home, repeat, repeat, repeat.

For some bizarre reason, they did not put a J-tube in at the original surgery, even though they knew there was a high likelihood of complications and my husband has a food allergy (they were unable to mainline food products as he may have had a reaction to it) so until he got out of ICU back to the ward he had no nutrition.

There have been other blunders with nutrition.

He has been Nil By Mouth since 18th August, yet on tuesday someone changed his meds to pills.

When I challenged the senior nurse she admitted it was an error.

Now my husband is talking about hiring a hospital bed so he can come home, I'm not sure that's wise and all the responsibility will land on me.

I don't know what to do for the best.

Does anyone have any idea how long AL holes take to heal on their own. Is it weeks or months?

Is there any hope of having someone sort of 'normal' life again.

Anglars 2 days ago

Hi. Both you and your husband are obviously going through a very difficult time. I am writing to you as I had a fairly large AL leak which became apparent about 2 weeks after the operation. It took a further 7 weeks to heal and I was given frequent CT scans to monitor the healing progress. Nutrition was given initially by PICC line and then after a few days I had an NG tube fitted for the remainder of the healing process. Concurrent with the above I had a chest infection which required the appropriate course of antibiotics throughout this period. All this took place 2 years ago. As we all know every patient is different and so of course are outcomes but I am recounting my story to you to hopefully give you some encouragement during this difficult time. I am sure the hospital will advise when it is appropriate for you husband to leave particularly after this major complication. We all like to get home asap..... but.

I am really sorry to read that you are having such difficulty with hospital communications as I and my wife have had the totally opposite experience with incredible support from the team. Have you tried speaking directly on the phone with the Upper GI nurse specialist ?

Metnight50666c 2 days ago in reply to Anglars

Thank you, I appreciate you taking the time to give me some hope with your story. I realise everyone is different and their healing/recovery will be different but it is encouraging to hear you had a significant leak and it did heal.

May I ask how you are doing now. Is it easy to adjust to a new 'normal' eating so little and very often?

Do you have to sleep propped up?

I've written a note to the hospital patient liaison service in the hope they can get me some answers to the questions I have and once I know more, I can try to figure out a way through this to best support my husband while not running myself into the ground as I'm exhausted.

Anglars 1 day ago in reply to Metnight50666c

There are lots of stories on this site of how various people have adjusted to post op. eating. I think it is reasonable to say that nearly all of us have struggled initially. Eventually your body does readjust and you just find a regime that suits you personally. I still graze and am very careful on the quantity of food I consume at any meal . Portion size for me would be circa 1/3 of preop life. Yes I sleep propped up with a wedge but I am fortunate that post op. I no longer suffer with acid reflux. Everybody is different and that can be observed from the various comments on this site. Stay strong and give yourself some rest. This illness takes its toll on partners perhaps even more so than on the patient but we so appreciate their support. I hope all goes well for you both.

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