four years post op and cant return to work

[janiehun]

my husband is 4 years post ivor lewis and his doctor has told him he probably will not return to work at all [he is 53] because of different mental and physical complications. He suffers with long term depression since his cancer diagnosis. He has problems with his bowels where he gets no warning that he needs the toilet but a sharp pain in his stomach. He doesn't always get to a toilet in time and has soiled himself quite often. He also gets a 'locking' sensation in his side and leaves him unable to move for a while. He had a heart attack whilst having his chemo before his op and because of that he can also get very tired easily. I was just wondering if anyone else has not been able to return to work after this long? He does feel like he's on his own sometimes.

[hilr]

Hi Janie, we're all different. The diagnosis and treatment for OC is immense, so many highs and lows etc. Unlike some others cancers, we're left with permanent side effects like difficulty eating normally, various digestive issues, pain, toilet urgency etc, and for that reason we can never really put it behind us.

I am 60 and 16 months post Ivor-Lewis, 12 months since chemo finished. I returned to work straight after chemo, I love my job and that was the right decision for me, I actually feel begs when I'm at work. But, it was not without it's challenges -I regularly suffer early and late dumping syndrome, and have to sit at my desk for an hour til it passes. I travel regularly and stay away and suffered severe anxiety attacks when doing so, initially cancelling events. I am blessed with a strong mental constitution so was able to talk myself through/out if all this but I have read that many if us need counselling afterwards.

All you can do is support your husband, make sure he gets all the best help available, maybe talk to others, perhaps through and OPA group, and see what happens.

At least we're still here, unlike the many pour souls that have lost their battle with this awful disease. Love and cwtchs, hilary

[DaddyPig]

Hi Janiehun. My name's Paul, and I just thought I'd reply to your post in order to let both you and your husband know that you're not alone.

I've posted on here previously, with much more detail but, in short I had my operations two years ago. In the end I lost both my oesophagus and stomach, with my intestines now providing me with the ability to eat. I get similar toiletry issues as your husband, but not to the same degree, as to date I've managed to avoid accidents, even if only just. My ribs and back still give me pain but, again, not to the degree that your husband suffers. Since the company that I was a director of went into liquidation, I've had periods when depression has got the better of me, and the feeling of ' what else can they throw at me/I've had enough' takes over. In the end I find myself wanting to prove that I can survive cancer, and I can't quit until I've looked at every option. If I have to live on benefits I will, but I'd rather have the personal knowledge that I'm earning my own way. For that reason I'm attempting to start up my own 'work from home' family history research business called 'Find Your Past,' helping people identify their family trees. Up to now it's been very slow progress, but I can't give up just yet. Possibly their are work at home options for your husband?

This website is brilliant, and the advice you will receive is very much worth while looking at and discussing with your medical team. I received various suggestions regarding my bowel issues, all of which I went through with my consultant a couple of weeks ago. There are also pages on facebook where people who are recovering from, and living with the after effects of, oesophageal cancer discuss things. All of these will hopefully prove that neither your husband, or yourself (as this affects you just as much) are alone.

Please accept my very best wishes.

Paul

[cherrybailey]

I am seven years post op and in the same position. I had all my stomach taken away too, suffer with the loose bowel daily some days all day.

I have the same symptoms as your husband and more. I am 55 low weight also suffer with fatigue.

I saw a specialist after my op and all sorts of tests, different diets etc. I take anti dep and still find I get low and fed up with it at times.

If I go out I time my eating (If early app wait till after or allow time) I have a second hand mobility scooter which is a god send if I go out. (Energy and toilet)

I hate not being able to work and only get the lower rate of disability, not enough to live on.

Wish you all the best and hope things improve for you, you are not alone so hope it is some sort of comfort for you. x

[SteveJ]

Hi Janiehun

Your husband isn't alone we are all here for him. I was diagnosed with OC when i was 55 and I went through times of depression and it isn't nice but i found a good councellor who was a great help. I too have toilet problems, luckily iv'e never had an accident but when i have to go I have to go. I'm almost 8 years post op now and I haven't worked since my diagnosis with all the little problems i have they all add up so i know I cant work again and have accepted it, as Hilr says working was the right decision for her and not working is the right decision for me,we are all different. This is a great site for help and there is usually someone who has been there and or done that.

Kind Regards

Steve

[Hidden]

Yes I am 4 years too and not been able to go back to work.Permanent side effects etc so its not that everyone recovers well enough to work unfortunately.At least we are alive as many at 4 years are no longer with us.Do you claim the benefits you are entitled too and visit Gp and consultant to discuss problems?Medications for nearly everything and especially depresssion.

[Hidden]

I think that it is unusual for people to be able to return to work in the same way as they did beforehand. Firstly there is the stamina issue that affects people for a long time afterwards, and for others it is a problem with physical work like lifting and bending that is not compatible with a new 'stomach' in their chest and having to eat 'little and often'. Or sudden fainting from dumping syndrome that might affect professional drivers. And sometimes we wonder whether we would still have been able to keep up the same pace as we did anyway because we get a little bit older as well, even of we have not had a heart attack.

You sometimes have to let go of the idea of an immediate return to work for a while. Perhaps a part time job might be possible in the future.

Trying to sort out the depression is really difficult, as many people who suffer this will tell you, but the light at the end of the tunnel does appear and does get bigger as it eventually lifts.

The ruined underwear is a common thing and very, very dispiriting. It may be worth returning to the idea of a food diary in case a particular food causes the problem. There is increasing recognition of this urgent, sudden onset diarrhoea problem after cancer treatment and it might be something that a gastroenterologist might be able to help with in case it is linked to a bacterial problem in the gut. The absence of stomach acid has all sorts of consequences, but it is complicated, and they would need quite a lot of detail in chapter and verse before being able to offer any prospect of a remedy. There are breath tests for bacterial overgrowth and the hospital may be able to give you an appointment for one to check this aspect.

It sounds like you both need a period of stability and recovery from a very traumatic period you have been through.

[haward in reply to Hidden]

I agree with Alan on the gastro enterologist. I am 17 months post op and seem to have recovered quite well but in the beginning I had a number of severely painful episodes after eating and I had a few near things with food requiring a swift reappearance. My surgeon told me that if this didn't settle down , if it affected my quality of life he'd find a gastro enterologist to look into things. My system settled down

[listen]

Hi Janiehun,

I am 6 months post op and still getting Herceptin until the end of January. I own my own business a bed and breakfast on the central coast in Cali. I used to work 14 hours a day and love, love my business. Fortunatley had a former employee come back to work when I got diagnosed as she had left for maternity leave and was gone for two years but came back and has helped my husband and I out as my husband owns his own business as a Contractor. I have for the last two months been doing the physical shopping for the Inn and I have to tell you by the end of my day I am exhausted. I am able to work from my home on the computer to check on the reservation systems and do all the paperwork. I am on anti-depressants and still experience depression and have developed neuropathy from the chemo. One of the most difficult things I think from listening to others on this site is trying to cope with the fact that our lives will never been the same as it was as I am 50 years old and am young but do not always feel that way but try to keep thinking that way. As my good friend whom also happened to be my radiologist oncologist told me that after what I went through it aged my body 15 years. Taking everything into consideration I keep stating that I am above ground and am grateful as the alternative I am not ready for! Hope this helps and just know that we are all going through different but the same. This site has been a godsend to me and has taught me a lot. I am able to go to my oncologist and have more information and ask questions that have been out there on this site. I also feel that I can relate to others and that lets me know that I am not alone on this journey. I wish you and your husband well.

[janiehun in reply to listen]

Thanks for all your replies guys. At least my husband doesn't feel like he's on his own..that makes a big difference and like ive said to him like some of you have..hes still alive. Doc once said to him he needed the op to save his life but his life will never be quite the same again. x

[Gerard]

Hi he is NOT in his own I am 3 years post op and I have similar problems

[janiehun]

Thanks Gerard he feels a little better knowing he's not alone and that other people have similar problems to him. It can be annoying as some people look at him and think there's nothing wrong. This site has been a godsend to both of us x

[GlenR]

I had my surgery January 4th 2015 and like most of you I deal with many issues . The problem is there are very few oi us and the person who cuts us really is only concerned with did i get it all and successfully replumbing you based on the procedure he or she has been trained on. There are differant surgical protocals followed . I have learned that my surgeon routinely cuts the vegas nerve and in reading up on the vegas nerves function you can see why we deal with what we do. Its text book. The other problem I have considered is the lack of sufficient pancreatic enzymes to break down fats. I was shocked at how much your Poo can say about whats going on in your gut. If it floats stinks to hell or is a odd color all of that means something and pancreatic enzymes play a huge role in managing that , Now here is the problems first we are all seeing several doctors and this issue is controling out lives and who can we talk about it with? Well if his title had MD in it he was getting the low down on it and he will take a stab at it they all will. They order tests which need to be read by someone who has a indepth knowqledge of the after affects of our surgery. Example My pacreatic enzymes look ok but with taking ia enzyme therapy I have reduced urgency and decreased runniness and odor so what did that tell me? If I was normal there the dr would be right but my new body may need additional enzymes to compensate for the shorter cycle time and lack of acid soaking my stomach gave it. I am happy to hear about concerned partners and family I did mine totaly alone. Everyone I know got tired of hearing my problens and began distancing themselves. I have gone through to much to lose now though. And despite depression which is getting hard to control I keep up the fight to understand. If it wasnt such a moving target. Today something bothers me tomorrow it will keep me in the bathroom for a total of 5 hours instead of 21/2 to 3 like it normally is. After the enzymes I cut that in half sometimes even more and I started seeing a change in weight slow but its there.

to avoid drug interaction induced diareaa is a concern because of all the doctors perscribing medications without closely monitoring which drugs have side affects due to interaction with something another dr has you on. I found two such situations in my drug list and stopped them all and have slowly added the inportant ones watching closely for symptoms

Lastly Ive found when I drink in relationship to eating which is a day long affair and I think that is something that will never change I live to eat even though I dont enjoy it anymore. but if I drink a lot ( a glass full or more) within 30 -45 min of eating anything significant (a sandwich or more Im fixin to blow up the porcelein.

I consider what Ive learned as a step in the right direction which is controling symptoms and something I wil deal with forever. Im looking for a gastro to consult wiith that makes the effects of post surgical patients like us if someone knows of one please post it. I dont care where in the world they are I can do a consult by skype just to pick their brain, Thats my next step

On a positive note I was told that I had 14-18 months to live in Aug 2015 and to make plans, well long story short I figured if Im already gonna die then I cant screw up anything trying to live. I found a surgeopn who agreed to do the cutting and a ocologist to poison me after to mop up and cells that might have escaped. Ive had 3 negative pet scans to date, Im alive a new foe to do battle with but thats the way I roll. Good luck everybody

[liz_crisp]

Hi Just to Let your Husband know, I worked long days and ran an office with alot of part time employees, I have never fully returned to work and the realisation that i could not do the job i had done before I was diagnosed was really depressing. I was 48 when I was diagnosed and a single mum. it took a long time for me to accept that i could actually do other work and that i was better off for it. I did work part time for the company and they were exceedingly accomodating but the intricate detail and close checking of data was not compatibile with Chemo brain and the fog of depression. He is definitely not alone. I also had a locking sensation and sharp pains in my side which we discovered were adhesions. when i had my gall bladder removed they did some tiding up and this made the situation alot better.

Cheers Lizzy

[Tsuzuki]

I know this post is old but some of us are still having issues. I was diagnosed july 2015 and after chemo\radiation and surgery im left without my esophagus and maybe 1\3rd of my stomch. I went to work rehab and physical therapy trying to get back to work. One year almost to the day I returned and tryed to do my job as a journeyman lineman. The guys that go out at 2 am in the storms and put powerlines back up. I lasted maybe 2 1\2 months. Constantly throwing up and trying my best to not bend over for too long. Needless to say I could not continue working. It was not safe for me or my co-workers. I had lost 30 lbs in 2 months and I saw it as a certain death trap to continue! I had a reoccurance in Aug 2017. Was told I had 6 months to a year if no treatment. Luckily the treaments aloud me to get the surgery. Now im dealing with awefull bile reflux issues. I now look at life as ...im lucky to be alive and my job from now on is just trying to stay that way. I doubt I will ever be able to do any meaningful work or at least not as rewarding as I was. Managing to eat enough is hard enough without bile issues so if I can get that straightened out ill be content. I was a strong 6'4" 260lb man and im now 155lbs shell of what I was. Anyway if your in the same boat I would think about just trying to make it day by day, if you need work in your life find something rewarding and make sure it fits into your new self. For the most part depression is a slight issue mainly like someone else mentioned the people around me grow tired of my conatant issues so I see less and less of them and it is understandable! Luckily my wife has been great and has stayed by my side so far so im happy enough. Anyway this was a good time consumer while im up at 3am with bile reflux again.... take care out there... life will not be the same after but you can still be content if you realize what the doctors did was not to better the conditions of your life they did it to save your life. My surgeon told me that while I was asking how life afterwards would be before my first surgery. It really put things into perspective for me.

GregB

[Popsic]

Hi janiehun

I am sorry to hear about your hubby, I can’t return to work either, I am 7yrs post Ivor Lewis, like your hubby I have no warning just a pain then bam, I also get that “ locking “ feeling you describe.its a bit scary . I get late dumping syndrome too. My docs, dietician and oncology nurse are still trying to get my meds right. I’ve just learnt to accept that we’re all different and things affect us differently. Tell him to not beat himself up about it, take it for what it is and try to enjoy life. X

June

[janiehun in reply to Popsic]

Thanks for sharing that. It's good to know there are people out there that do understand. Even Clive's doctors/nurses couldn't make sense of it. I think we are just accepting the fact that he will never be the same. But he is alive and that's what matters. At the end of the day the surgeon and oncologist saved his life.

[Popsic in reply to janiehun]

That's how I look at things. You learn how to deal with things. Mine gave me Creon to take with my meals, it's a life saver, slows the process down. I have delayed stomach emptying so I take 2 antibiotics a day to help that as I'm allergic to the ones they use for that, but you survive, x

[innaska]

My husband 52 , as well 4 years post Ivor -Lewis , since operation on strong pain killers, suffer from depression , luck of energy , damping , very often womiting after food, pain, felling locking sensation the same like your husband , easily became upset , or very angry , not working since op, 😒