Hi, my husband has oesophageal cancer in Barrett’s Oesophagus (T2 N1 M0); completed chemo-radiation treatments and scheduled for surgery on 2/6/2020.
Is there anyone here with similar diagnosis to provide information on their post-op experience and how can I best care for my husband?
Hi...
Having undergone this extremely complicated operation your husband is at the start of a very long journey which, at times, may seem difficult to achieve, but with your encouragement and his determination he will make it, although he may look different when he’s fully recovered.
It may take him sometime. I’m eight years post-op and consider myself more or less back to my pre-op fitness and free of many of the issues and have been for sometime.
His first goal is to push himself to walk. Even climbing the stairs was a real effort in the beginning. But he should set himself targets to achieve, such as walking to a certain point every day and so on.
Eating and subsequent weight loss are big issues to start with. Eating little and often is the key. He’ll know only to well when he’s eaten too much! Eat high calorie food, dairy products etc.
He will experience issues which you may need professional help to overcome so stay in touch with your assigned specialist nurse at the hospital who you will find to be very helpful.
Hope that helps. But the essential key to overcome the issues is encouragement from you, family and friends. With that his journey will be made bearable.
MFH
There is a lot of information about this operation and recovery on the Oesophageal Patients Associations web site. You will find this invaluable over the coming months . Contact 0121 704 9860.
All the Best
Phil
Thanks Phil, I’ll check out the OPA site.
Thank you MFH28 for your reply! Yes I do find it daunting just learning from the experiences shared here....it gets scary at times reading what some have to go through in their journeys.
Stay well and stay safe.
My situation similar to your husband’s: early diagnosis 6/2017 w/no mets, followed by chemo and radiation, and Ivor Lewis surgery 2/2018 (minimally invasive: 5 ports + thoracotomy).
Surprised at the absence of a comprehensive, patient-focused guide, I wrote a blog and a guide. Mostly therapy for me, but some folks have found it useful. It's a bit of a read (c. 50 pp) and focused on a specific treatment protocol (FLOT-4) that's become a standard in the US, at least for now. Includes things like exercise, weight loss most treatment teams don't include or prep for. (Ten-14 days on a liquid diet post surgery burns 20-30 lbs/1.5-2 stone of lean muscle mass; the better one preps the body, the less the loss. )
If the info would be helpful, send me a PM (dlocke at wordsmith dot net) and I'll send the blog address with link to patient guide.
Thanks docLocke, yes I would love to read your guide.
My husband’s weight was 83kg at diagnosis in Feb this year and he did lose a couple of kgs after Chemo-radiation therapies. He started to have a good appetite and was able to eat normal size meals from last week because he didn’t feel pain in his chest and sides with every food and drink he partook. Today he weighed 83kgs.
He still have 6 days to surgery and hopefully he can continue to put on weight and exercise a bit when he’s not too tired.
I’ll pm you shortly...thank you.
You'll probably have seen some scary things on this site, but lots of good stories too. Many on this site made good recoveries.
When you see him after the op, you will get a shock as he'll be hitched up to lots of tubes and oxygen. Just give him a huge grin and tell him how brave he is!
Good luck. And rely on your upperGI specialist nurse.
Thank you, much appreciated your reply. This is what I need to know and have a little ‘self-talk’ to prepare myself when I see my husband for the 1st time after the op.
I had the op in Feb 2012, it can be a slow and strange journey. Eating habits change, ie size of meals to start with and other odd things. For me it took me one strange one was it took about 3 months before I could enjoy a cup of tea ? Good days and bad one but quite a lot of people on this site have gone through this journey. Take each day as it comes eventually things get better.
Have you a local support group, open to those due to have the op and your other half. I go to a local group where (before this virus) we used to meet every 3 months. With guest speakers, everybody giving their own experiences and chatting to each other plus tea and biscuits. Talking to other who have gone through this can be a great help.
Hope all goes well,
Hi Mick, thanks for your post. I am not aware of any support group but will make enquiries.
We had a face time session with the physician yesterday and he’ll be my go-to-person.
Whether it is assuring or not, we’ve been reminded that it is a major surgery (curative) and a long journey to recovery.
Was told that my husband‘s health is good and he recovered his weight lose (2kg) and tolerated the chemo-radiation well and results were encouraging. He said my husband may not need to be fed through a tube and may be given drips only while in ICU.
Praying for the best outcome. Thanks fir your concern.
Regards
Kelly
Keep us posted Notknowmuch. We'll be thinking of you on Tuesday.
From a Carer’s Perspective 
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