Just saying hello from Sheffield . My husband is scheduled for the Ivor Lewis op on 2nd August following 5 weeks of chemo-radiotherapy. The op and aftermath sounds daunting so it is good to hear from others about their experiences .

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My husband is scheduled for  the  Ivor Lewis op on 2nd August following 5 weeks of chemo-radiotherapy. The op and aftermath sounds daunting so it is good to hear from others about their experiences- thanks to everyone  for sharing

  • Sorry to hear about  your husband but trust in your team and ask plenty of questions.  I didn't  have the same operation  to the one he's going to have . But a great friend of mine Geo Ferret  been a great help with his dairy and he had same operation 

    Stay Strong and safe  Pray 

    Nic nac

  • Hi Fisher,

    I had this operation on 29th February so I am now over 18 weeks post surgery. Although I am still a long way from being fully recovered, I am definitely feeling better as each week passes. My advice to your husband would be to spend the time before his operation getting as fit and strong as possible as this will stand him in good stead for his operation and recovery afterwards. Your role as his support team is also crucial and should never be underestimated. I wish you both well for the pathway that lies ahead. CB

  • Thanks Nicnac... it is good to hear from folk in a similar position... will try to stay strong - and  cultivate positive mental attitude !

  • Hi Cool Blue

    good to hear you are feeling better each week - I think it may be a long haul.. I wonder how youve gotten on with eating and with sleeping?

    Our surgeon has advised just what you said - to get fit and strong and thats what he's focused on- he was i until this a long distance cylcist- but  is only just able to go on static bike right now -- w

    Surgeon also sad waking up in High dependency unit need some mental preparation- do you  or anyone else have any advice on that?

  • Hi Fisher. All I can say from my own experience is that waking up on the high dependency ward or ICU is not something to be feared. I found the staff, both day and night, caring, sensitive and gentle. I felt totally looked after when I was there and I didn’t feel anxious or scared. I also slept a lot of the time. I found the nursing staff efficient and extremely knowledgeable about my operation and expected recovery, and I felt there was real respect between the Doctors and the specialist Nursing staff. I hope that my experience helps you in some small way. I feel that having the ‘high dependency’ element highlighted to you, may cause unnecessary worry. With best wishes, Julie 

  • Hi Fisher,

    As far as eating goes, it was certainly a bit of a struggle to begin with. I was sent home with a JEJ feeding tube into my stomach and had to connect myself up to a feeding pump for 12hrs each night. This was then reduced down to 8hrs and eventually (after a few weeks) discontinued altogether and I had the JEJ tube removed. Following that, trying to get enough calories in was a bit of a struggle and some weight loss is inevitable. I lost nearly 2st. Although what I was able to eat was only very small amounts, I tried to ensure that the calorie count was high (plenty of butter, cream, cheese, etc) Things have improved since then but it is a very slow journey and I am far from being at the end of it yet. I’ve been told it can take a year or more for the body to get used to its new internal plumbing. I sleep with 3 pillows to avoid reflux (which is very very unpleasant). Initially I had to sleep on my back (which I found very difficult to manage) but I can now sleep on either side. I take lansoprazol twice a day and will continue to do so for the rest of my life. Similarly I also take multivitamins. Both of these are on prescription. I also take a couple of spoonfuls of liquid antacid (Peptac) at bedtime to guard against reflux. These arrangements, coupled with not eating anything after about 8pm seem to work for me. 

    After surgery, I woke up in ICU and was there for 8 nights (I had a complication after surgery and had to be knocked out and intubated as I was struggling to breathe otherwise I would have been out sooner). In ICU I was connected to a plethora of monitors, drips, drains, etc and this is something you should be prepared for the first time you go to visit. ICU is a very alien world and some people can suffer from nightmares and other issues after being in it but patients are very closely monitored and this should be reassuring for you both. After ICU I spent a further 8 nights on the ward before being discharged with a car boot full of feeding supplies and medications. 
    You are absolutely right about it being a long haul. Your husband will need your help and support probably more than he has ever done before. The road to recovery is long and slow and there may be some bumps along the way. It can be very frustrating when you don’t seem to be making any progress but you just have to try to be patient and take things one step at a time. You will have lots of questions and queries and this forum is one of the best places to get answers - from other people who have been through it all before you. Good luck to you both. CB

  • Hi Julieanne

    Thankyou for your comforting words- good to know  you felt ok there  and it is possible not o get too freaked out!

  • Hi there Cool Blue

    Wow it sounds like you've had  a lot to contend with - well done ! 

    We are  expecting  a bumpy ride .... and life style changes 

    Our surgeon was suggesting getting up at 6am to be able to fit  6 small meals in and advised not to eat  4 hours before bedtime to avoid acid reflux--- also to  balance eating and drinking- does sound like a balancing act... I guess we will just have to see what works

    and it seems to me on this journey each and every day is already very different

    F

  • Same day as myself 2nd if August. I'm getting mine done in StJames dublin. I'm a bit anxious but it's coming out.

    • I'm getting my operation same day bit anxious but it's coming out!!