update post Ivor Lewis: Hello, I am Mrs... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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update post Ivor Lewis

Mauser1905 profile image
24 Replies

Hello,

I am Mrs mauser here. We both reading the posts since my husband got diagnosed oesophageal cancer October 17 and very valuable tips here and thanks everyone for the kind words and supports.

My husband had his Ivor Lewis operation done on the 6th of February. we were disappointed initially on the fact that he had to have this major operation for a tiny tumour. But realised that we left with no choice. I should admit here that we grabbed plenty information from this forum and many informations and discussion here enabled us to mentally accept the life time change post surgery. we are also grateful to the supreme power that they could identify his tumour in the early stage. So the surgeon have told us that this surgery is doing as a curative surgery as its T1. My husband had no other health history and a non smoker and tee tootler. so we including the doctors expected no major complications to happen. He did well for the first two days after surgery. They kept him on ICU for the first 48 hours on 3 litres of oxygen. I even took our primary aged children to show him the next day after surgery. I went to hospital on the 8th morning to take him to high dependency unit as that is the original plan. One of the doctor took me into a private room and told " your husband took an unexpected turn and i am going to put him on ventilator. do you wish to see him?". i just looked at him and my heart got broken into pieces. I couldn't believe my eyes, that the man sitting in the chair last night is very unwell. Drs told me 48 hours. we have no family here in this corner of the world and no great friends circle either. My brother in law just landed india that morning after dropping my mother in law here with me. i do not speak my husbands mother tongue and my mom in law cant speak English. i had no idea how to tell my husbands mom that hes unwell and on ventilator. I just managed to phone couple of my friends, sister who lives in Kuwait and my brother in law who landed half an hour ago in Mumbai airport and was standing in immigration when i phoned to say that brother become unwell and on ventilator now. I could hear him shocked and left with no speech. I only heard he is whispering to himself that i need to return to UK. From that day 8th morning, we family had started a different kind of life, anxiety, and stress and I call it darkest period of our life. I wish no one would ever go through this.

I am a nurse practitioner, so my little knowledge made the situation so worst. I knew exactly what was happening. so Once the first 48 hours passed drs again told me another 48 hours. I could see he has low oxygen level even being on ventilator. he had an urgent CT scan on the 8th and told me he has consolidation in the lower lobe. but they didn't tell me he already developed partial respiratory failure. I could see he was getting more worst day by day. Had urgent CT again on sunday and confirmed severe pneumonia and complete respiratory failure. that's where I heard the word ECMO first time in life. My husband was put on ECMO on the 12th February. But I heard the worst in my life. One of the intesivist took me into room and told this is the CT report and I am going to give him last chance of survival. If this fails to survive him, then I might have to think of turning the ventilator off some point. And again I was on my own in that room to listen this. words are inexplicable to express my feelings here. I personally knew most of those anesthteist as i work with them. So one of them who is my friend came and told me your husband is critically very unwell. the biggest puzzle here was they couldnot identify the organisms causing pneumonia for the first 9 days. It was 4 organisms caused pneumonia and the nasty one found out the last. By this time my husband had developed all possible complications that could happen. pneumonia, respiratory failure, respiratory acidosis, lactic acidosis, complete deranged liver functions, severe hypotension, right side heart enlarged, hospital acquired C DIFF, all other possible systemic and peripheral complications like severe swelling over the body including the eye lids then ? toxic mega colon as a complication of c diff. you name it and he had everything. He was on ECMO for 13 days and he made it. He discharged home on the 19th of march which took one full month of ICU and 3 weeks of HDU and ward. We kind of lost the number of CT scans, chest xrays, bronchoscopies, echocardiograms, ultra sound scans he had and last tracheostomy . He also developed some fluid collection on both lungs towards the last week of discharge and still got pleural effusions and atelectasis. Liver functions are still off, . My poor husband dealing a lot at this moment on top of his surgical recovery. He is a fighter and really doing his best. I feel very sorry seeing him struggling. then I know we are extremely lucky that he is alive and with us and I am able to say the stories to him and to the children.

sorry for the long post. This is a rare event and I thought of sharing this with all of you here. i could write a book about my feelings and emotions i or the rest of the family had gone through. My brother in law who returned to the uk on the 13 th February and just gone back last sunday. we both used to leave home after dropping children to school and spent till late night in the ICU. Our hospital has flexy visiting time, so we were beside him till we leave around 10pm. we both had our prayer books and just sat and pray all day. At the end our prayers are heard and he is at home recovering. its a long road to recovery. I could see that he has good days and bad days. This is our story here. But I know there are plenty people out there, conditions are more worst than my hubby. so no reason to moan. Everything I have right now is a bonus.

Update by Mr:

Home for last 2 weeks. Lost 1 stone and stabilised around 11stone weight. Came with JEJ tube and feeding overnight. Oesophagectomy has contoured inverse V shape cut on tummy and cut on underside of right shoulder. Stapled cuts. Scars all over the body for various punctures.

Had horrible time in last days of ITU, and HDU due to nightmares and hallucinations because of long stay in ITU.

I have no memory from surgery table till end of ITU stay. But watching videos I can connect the hallucinations I had and physical actions during sedation.

Currently recovering from flu and cough. Had lot of retching and saliva build up also there. Managing all variety of food and indulging some spices lightly.can drink milk. Though palpitations and sweating happens after eating. Had issue of hot and cold temperature flashes which was blamed on the ECMO, these have weaned off by now.

Last week of longtec 10mg and short tec, paracetamol. No other Medicines.

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24 Replies
rayw55 profile image
rayw55

It is good to hear that you have seen the light at the end of the tunnel particularly given how far away from it you have been. It must have been hell during the darkness. I also had many hallucinations after my operation which were so real to me that I can honestly say I feared for my life but now 8 years post op I am living life to the full enjoying every day. I still get the odd bad days where I have diaohrea for 3 or 4 days at a time, fatigue and tiredness but in general my health now is good. I wish you all the best of life to come

Mauser1905 profile image
Mauser1905 in reply to rayw55

Thanks dear.

I recall someone told me about light at the end of the tunnel, unless it's another train coming...... which was true in my case on couple occasions.now can laugh on it having come out of it alive.

I had medical torture and attempts to kill me in my hallucinations twice. It's funny to see the videos in which I was waving hands to flights in my hallucinations. 8 years is quite a long time post op. I am just learning to live again. Wishing all the best for all of us.

Kate1503 profile image
Kate1503

What a terrible time you have both had. I could hardly believe what happened and can't imagine how truly dreadful it must have been for you.

So pleased you are home again and can start on the road to recovery. Wishing you all the very best for the future. Kate

Mauser1905 profile image
Mauser1905 in reply to Kate1503

Thanks Kate. I am glad that my wife and brother took photos and videos so I could catch up. Believe our Karmic account have settled for now. Now fresh start. Good luck for us all.

winnie4711 profile image
winnie4711

What a horrendous time you your husband and family have had. Let’s hope he now keeps up with his recovery x

Mauser1905 profile image
Mauser1905 in reply to winnie4711

Thanks a lot. Working towards recovery although it's a long haul.

kiddy profile image
kiddy

Wow you have been through the mill. Glad he is going the right way now. Don’t rush the eating and read up about dumping syndrome this can cause palpitations sweating. Best of luck

Debbie

Mauser1905 profile image
Mauser1905 in reply to kiddy

Thanks. Feel very hungry every now and then. Huge learning curve, albeit painful. Getting there slowly.

rasor profile image
rasor

Hi

Amazing ,but you have come out the other side of the operation well done ,keep on going forward ,all the best ,the hallucinations are the worst ever .

Cliff

Mauser1905 profile image
Mauser1905 in reply to rasor

Thanks. Yes the hallucinations and nightmares were terrible. Wouldn't let me sleep in the night time in ITU and HDU. Glad over it in the ward itself.

Mentalmicky6 profile image
Mentalmicky6

I went though a similar experience in 2012, I had the Ivor Lewis and was back on the general ward after three days but became very unwell on day six post op, I suddenly couldn't breathe and just managed to reach the emergency button, the next thing I remember is waking up after five days from an induced coma connected to a ventilator and what seemed like dozens of other wires and tubes I didn't know where I was and thought I'd been in a car accident, apparently I'd developed double pneumonia, cardiac tamponade. Liver impairment kidney failure etc etc, but thanks to the wonderful staff at the Royal Marsden in Chelsea they managed to keep me going while my own body defences sorted it out.

Somehow I managed to walk out of that hospital after about a month and much to everyone's amazement started back at work (plumbing) after eight months

I'm still working now and will be seventy this year, so it's amazing what the body can recover from.

All the best keep postive

Mauser1905 profile image
Mauser1905 in reply to Mentalmicky6

Wow. You are a very strong person. My wife said your complications were more critical than I been through and I can only empathise and get inspiration to stay strong.

Today I spent 1hr on laptop to sort few things and was tired out quickly. Desperate to get back to normal life so can work again.

lynnbibb profile image
lynnbibb

What a dreadful time for you all, and one we can totally empathise with. My husband also developed double pneumonia and a rare form of sepsis that didn't respond to antibiotics, also his stomach stopped working so he was in hospital for 5 weeks.

We sincerly hope you are over the worst and can now move slowly forward. Stay positive, with one day at a time, and good luck to you both xxxx

Mauser1905 profile image
Mauser1905 in reply to lynnbibb

I hope your husband is doing great by now and you both enjoying quality life after the experience.

This forum has given us a lot of information and positivity. Thanks

Debbiewallis profile image
Debbiewallis

You are Superman !! ... amazing one hell of a fighter . Keep up that spirit !!

Debbiewallis

Mauser1905 profile image
Mauser1905 in reply to Debbiewallis

Lol. Thanks.

My wife is Superwoman. She brought me back and the way I am grumpy git more than often, I am lucky to be with her.

At times I am in tears with the changes and she is my inspiration and motivation to pick up and move on.

Debbiewallis profile image
Debbiewallis in reply to Mauser1905

You know what they say “behind every man there’s one hell of a bloody strong woman “....!!! I should know I’m one of them too !!

Best wishes Debbiewallis

rasor profile image
rasor

it was worse for our partners ,we are very lucky to have great wives ,onwards and upwards every one ,best wishes to all

Mauser1905 profile image
Mauser1905 in reply to rasor

Yes. Blessed to have such a wife. I can't even imagine if roles were reversed, I won't be so strong how she managed and faced everything.

Ian47 profile image
Ian47

Hi Mauser 1905 what an incredible journey you have been on. Wishing you all the best for the future. Ian47

Mauser1905 profile image
Mauser1905 in reply to Ian47

Thank you dear

Calboy profile image
Calboy

Hello it's not letting me inbox u as I put my old email in so won't let me log in but it sounds like what we are going through at this moment with my mum

Mauser1905 profile image
Mauser1905 in reply to Calboy

Can you confirm if you can see the PM I sent you? In which case I will send number in next PM.

Calboy profile image
Calboy in reply to Mauser1905

Yes I can see that

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