Hi I'm after some feedback. My husband is 7 years post ivory Lewis and has never been able to return to work. He's 55. Due to fatigue and bowel problems and depression to name a few. Has anyone else on here had the same problem of not being able to go back to work. I'm very interested in your feedback.
Thanks
Hi Janie,
I'm also 7 years post Ivor Lewis. I haven't gone back to work because I wasn't working when "it" happened. But I certainly wouldn't have been able to anyway. I also have lots of problems. I'm always surprised when people seem to be well enough to work a few months after surgery. I know it depends on the sort of work, but how can they do anything when they're feeling dreadful, dumping and needing the loo all the time. It can be very depressing.
I'm lucky that my husband and family take care of me.
Jane
I returned to work 4 months after my operation.But I was in a position with my company that 3days out of 5 I was able to work from home.
We are all different and a physical job with what we have been through would be challenging. However some work even part time can help with getting confidence back and feeling normal again.
Phil
Hi patchworker thanks for that. It was getting to the point that he thought he was the only one. It's so annoying that people just look at you and think you should be working because you look OK.
Sorry , can't help .
I am 8 years past surgery there is no way I could have returned to work. Luckily I had sold my business before I knew how ill I was. I had and still have reduced energy levels. Also bowel problems. I also suffer some pain (every day) in my ribs, I look ok outwardly but life is not the same although I am grateful for surgeons saving my life, it's certainly a better life than the awful year I had before my op. I go to regular three monthly meetings that have been set up in Oxford and I must say it's a great help to meet others in a similar position. Some are worse than me and some are better. Are there any meetings near your husband that he could meet others in same position. Wish him all the best.
Hi, I was one of the lucky ones who returned to work albeit 1 day a week at first within 3 months! But, with the support of a great wife and work colleagues I was able to do this slowing working my way back to full time, it did take its toll though and I was made redundant some 4 years ago. Since then I have officially been 'self employed' . I tried doing garden type work but have to admit that it was all too much, fatigue getting the better of me the more I tried to work, my limit was about a day a week really to stay feeling ok. I love classic cars so now I spend a lot of time looking at cars attending classic car auctions and many other auctions just to keep my mind occupied, as I am self employed the expenses incurred are recoverable to an extent and although my business has yet to make any money it hasn't lost any either. Pschycologically I need to have purpose or I know I will become very depressed very quickly, it still happens now and I become very itrrritable, moody and not a very nice person but as I say luckily I have a wife who supports and understands without that help and support who knows where I would be. My suggestion would be to continue supporting the way you are and see if you can get him interested in something he enjoys , a 'purpose' for him to get up and enjoy. I tries things like golf but it knackered me and we all need to learn our new limits and accept them to fully enjoy the wonderful life we have been gifted as a result of our operations.
This is one of the best things I have read in a long time. Thank you Ray.
I returned to work one year after my surgery and six months after my final chemotherapy sessions. I returned to work in a company where the people wanted me back and had looked after both me and family when I was so ill. That makes a massive difference to how you feel mentally. I wanted to go back and be a part of of something with people that wanted me to be to part of it with them.
I work in the City and had to commute by train every day. That was the hardest part!! I have never felt so vulnerable in my life, as I did/do getting on trains and standing on rush hour tube platforms. I look well, so was given no quarter by my fellow commuters. I was also ensured of never being able to get a seat on the train and that is hard. Then, just as I thought I had conquered my fears? I was knocked over on the escalator by a group of yobs who thought it funny to shove me. I don't think they expected me to fall (nor did I) but I went flying. I was not hurt, but I was shocked and struggled with my new found vulnerability. I wanted to get up and kick them into the air, but I couldn't even stand up without shaking. I think I was more embarrassed than anything. But I carried on and have managed to do so, with the support of wonderful family and my fellow workers and friends.
My early days were dogged by anxiety and a crushing lack of confidence. I then discovered that this was mostly caused by Metoclopramide tablets that I had been prescribed for motility issues. I stopped the tablets and the anxiety issues improved greatly, as did my confidence.
Like Ray! I had a love of cars and all things mechanical. When ill I resolved that were I to get better then I would compete the restoration on my thirty year old Mercedes. This has been a labour of love and a great test of physical strength. Lots things that I would have done, prior to cancer, without a second thought. I now found that I simply could not do without applying a lot of thought and often enrolling a friend to help with the heavy duty spannering.
The dumping was difficult. But with help from here and lot's of trial and error with my diet (I am a veggie) the dumping is under control, as are most of the other nasty symptoms.
Being around people helps to keep us engaged and socially accepted. So for that reason alone, I wanted to be back at work.
To my colleagues and my company who never gave up on me I am eternally grateful.
The hardest part is looking well when you are not well. I am now at a stage where I can have days without any mention of cancer or illness. That is another milestone.
But in summary, most days, I will at some point feel shit, but then recover.
Bruce
I'm ten years post op and never went back to a fulltime work, mainly due to persisting dumping syndrome which takes a lot of energy. I now work 13 hours/week.
Im 12 months post surgery and have just returned to full time work. It is a struggle and wish I could have more time off to recover but with having a young family and mortgage etc I had no choice. This type of operation is so debilitating I feel half the man I was before op yet glad I'm now cancer free.
I was very lucky. I was able to return to work. I did suffer from some depression for a few months after the operation; my surgeon said that this was no surprise.
Have you spoken to the surgeon or to anyone from the OPA?
Haward
In so far as work is concerned, I do not think anybody really regains the strength, wind and stamina that they once had. But there are a good number who can achieve a good acceptable level of fitness.
Fatigue can sometimes be due to lack of absorption of vitamins. Gentle, progressive exercise also helps in the early days, and it might still be relevant. I would think about a mineral and vitamin check.
Bowel problems? If this is diarrhoea, he might be suffering from small intestine bacterial overgrowth, which needs a gastroenterologist and a course of antibiotics.
Dumping syndrome - concentrate on a diet as if diabetic and ask for an insulin-sugar meter if possible.
It is no wonder that one feels fed up with all this, but it is true to say that depression after successful cancer treatment is not uncommon. I would seek advice firstly from MacMillan Cancer Support or a Maggies Centre. It is a kind of unresolved grief for loss of good health and strength in some cases.
The cancer treatment itself was successful, but these issues are significant health problems in their own right, and they do need proper resolution.
And carers take a lot of burdens too, so you also have to recognise your own needs!
Hi
I went back to work the Monday after chemo finished and about five months after surgery. A mixture of wanting to go back to being normal and leaving the cancer experience behind, plus financial reasons-a mortgage etc.
It was really tough, I was experiencing early and Late dumping, fatigue, pain and the 'fear' / vulnerability that others here have described. I have a one hour plus commute each way and travel a lot in the job.
I did it for three and a half years, and at times really struggled, even recently being sick at lunchtime when food disagreed with me.
Having got my finances in shape I retired two weeks ago, and already wonder how on earth I managed it.
I now get up between 9 and 10 (previously six oin the dot) and am able to linger over meals and have the required nap afterwards.
I won't get my state pension for another two years but have managed to cover the gap with a personal pension.
Survivorship is something we don't talk enough about, and as an OPA trustee I'm hoping we can do more. As you rightly said, we're so grateful to have survived, we don't like to whinge.
The clinicians are looking to offer a more holistic approach involving surgeon, dietician, psychologist and gastroenterologist, but this may take time to bed in across the UK.
Thus site and the macmillan forum are great for us survivors to share the reality of living after oesophageal cancer, and hopefully together we can optimise what that looks like.
I would urge every e to find a local OPA group to meet other survivors and sufferers, and if there isn't one locally consider setting knew up, OPA can help.
Good luck to you all
Hilary
"Survivorship" this is a strange state. I wanted (like us all) to just survive. I gave no thought to what "surviving" would be like. I thought I would just carry on with some tweaks here and there. Then the feeling of appearing ungrateful for being given another chance? It seems wrong to complain about ailments when so many people have worked so hard just to get us to this point. Then the friendship bit. So many friends just disappeared of the map. No calls, no visits, just no contact. This then followed by the awkward moment when I show up at some event and they are forced to be in our company. Shallow people who I now see were never true friends.
Hi Janie
Sorry to hear that your hubby is not feeling well. A couple of thoughts:
Fatigue - PPI's greatly reduce the absorption of magnesium in the bowel. Magnesium is an essential substance in the energy cycle. I would try magnesium oil (amazon about £8), 10 sprays on each thigh each evening. You cannot overdose on magnesium so it is safe to use. See my other posts for more detail. My wife who is two years post IL uses it with excellent results and generally has good energy levels. Give it a couple of weeks and by which time you should feel a difference.
Hobby - what about bowls. I'm a bowls player with many people in their 80's and 90's playing to a good level. It is gentle exercise and a fantastic social sport that attracts nice people. Just a thought.
God bless - I'm sure things will get better.
Contact me if I can help.
Steve
Hi Steve
just reading old posts. I am going to try that
magnesiumoil as my energy is low.
thanks for tip..hope your wife is well
Hi Bernadette
My wife is doing really well!
Occasional bouts of dumping but you learn to live with that. She still takes the magnesium oil (as do I), and her energy levels are good.
Hope the magnesium works for you!
Best wishes
Steve
I was a fit 47 when I had my Ivor Lewis 25 years ago. So ignorant was I about the op and it's implications that I took a fax machine with me into hospital. Ha ha, it never even got plugged in!
I did struggle back to the office after about 5 months and carried on for some two years, even making one overseas trip. But beset with all the usual problems catalogued above it proved to be a vain attempt and I was medically retired.
Self-image and self-worth are critically overlooked aspects of cancer aftercare.
Certainly many of us suffer PTSD (Post traumatic stress disorder) to a greater or lesser degree.
As a now nine stone weakling I took a martial arts class which helped with the vulnerability issues and agoraphobia, but my rugby playing son stresses what a bad idea it would be to attempt to kick sand in anybody's face.
I resurrected a lapsed hobby and took over the family's catering, initial complaints have subsided so I guess that that is going OK.
I have developed a serious interest in and practice of all aspects of computers to the point where I am now seeking to invent an 8 day week........there just isn't enough time what with the reading, gentle gardening, blah, blah.
None of this would have been possible without marvelous family and friends to the point that I now feel certain that life is doubly worth living.
I had to go back to work for financial reasons. I was only 32 when I was diagnosed then had chemo then surgery. I also had my two children before 5 year survivorship. Yes, I am always fatigued, yes, eating is awkward. I also have other medical conditions which are affected by the effects of the surgery and some caused by it. Having said that, I get to be a mother and it was 10 years since I was diagnosed last October, not something that I expected when I was diagnosed, let alone that I would get to enjoy my two children.
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