Just wanting to see if anyone has any experience of the symptoms my dad is suffering post-op.
Dad had T3/N1/M0 cancer of the Gastro-Oesophageal Junction. He had three rounds of ECX chemo to begin with. During the surgery they had to remove his entire stomach and part of the oesophagus, they also took 12 lymph nodes and found cancer present in one. They have since also changed the M0 to MX, which I understand to mean they cannot determine if the cancer has spread or not. They did say they got the whole tumour with a clear margin.
Immediately after the surgery he was recovering well, after about 20 days or so he started to have trouble swallowing, saying it felt like there was a lump at the top of his throat. This developed into fits of coughing and now he brings up bile after everything he eats/drinks. The same thing is also happening with his JEJ tube feed and all the recommend fortisips, ensure etc. The only things that seem to not have this effect are black tea and consommé soup.
The hospital have done endless tests including sessions with speech & language team, a videofluroscopy, ct scans. Numerous combinations of medications including Sucraflate, Metoclopramide, Domperidone, Cholestyramine and Maalox. None have resolved the problem or improved it. The problem has been reported to us as bile reflux/over production of bile, however they are at a loss as to why the same problem occurs with the JEJ tube as apparently this should never cause bile production as the tube goes in below the bile duct.
He is getting nigh on no nutrition at all and has so far lost 3.5 stone and he did not have that amount of weight to lose in the first place.
We are almost 12 weeks post op, 8 of which he has spent as an in-patient at the hospital. Follow up chemo has been cancelled as he is not fit enough to have it.
Tomorrow they are inserting a PICC line to hook him up to a machine 20 hours a day which will not aid nutrition but get all the vitamins/minerals needed as these are severely depleted now.
Has anyone had experience of this bile problem, I have read a bit about people having it during the night if they lay down flat, but it happens to dad after everything he eats and drinks. He can swallow food, so its not a problem with it going down he just says that feels a bit uncomfortable. I should also mention that he has never thrown up any food, its always just pure bile and clear foamy thick saliva.
If anyone can help at all we would be endlessly grateful as we are getting absolutely nowhere at the moment.
Thanks for reading and sorry for going on!
xx
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lb84
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The purpose of this site is so that you can "go on " ! x
I am 23 years post op and so claim to have a little experience .
I wonder if you mean 'reflux' -- Bile is one of several possible irritant components in the liquid which escapes back up into the throat ; both pre and post an eosophago-gastrectomy. Two others are Hydrochloric acid and Peptide enzymes .
The last two originate from the lining tissue of the stomach -- so their presence depends upon how much remains of the formerly stomach tissue which the surgeon has used in constructing the artificial tube which takes the place of the removed oesophagus and also the degree of enervation remaining from the dissected Vagus nerve serving that re-used tissue.
Here is an abbreviated passage concerning gastric secretions :-
The stomach is famous for its secretion of acid, but acid is only one of four major secretory products of the gastric epithelium, all of which are important either to the digestive process or to control of gastric function:
Mucus: The most abundant epithelial cells are mucous cells, which cover the entire lumenal surface and extend down into the glands as "mucous neck cells". These cells secrete a bicarbonate-rich mucus that coats and lubricates the gastric surface, and serves an important role in protecting the epithelium from acid and other chemical insults.
Acid: Hydrochloric acid is secreted from parietal cells into the lumen where it establishes an extremely acidic environment. This acid is important for activation of pepsinogen and inactivation of ingested microorganisms such as bacteria.
Proteases: Pepsinogen, an inactive zymogen, is secreted into gastric juice from both mucous cells and chief cells. Once secreted, pepsinogen is activated by stomach acid into the active protease pepsin, which is largely responsible for the stomach's ability to initiate digestion of proteins. In young animals, chief cells also secrete chymosin (rennin), a protease that coagulates milk protein allowing it to be retained more than briefly in the stomach.(Cheese making !)
Hormones: The principle hormone secreted from the gastric epithelium is gastrin, a peptide that is important in control of acid secretion and gastric motility. Others contribute to feelings of either hunger or satiation.
A number of other enzymes are secreted by gastric epithelial cells, including a lipase and gelatinase. One secretory product of considerable importance in man is intrinsic factor, a glycoprotein secreted by parietal cells that is necessary for intestinal absorption of vitamin B12.
In the normal stomach these secretions amount to 1.2 to 1.5 litres per day !
As you can see there is quite a lot going on before we even get down through the pyloric sphincter and thence round the bend into the Duodenum where Bile proper enters from the Bile Duct/Bladder and more potent chemicals are delivered from the Pancreas.
Adult humans produce 400 to 800 ml of bile daily.
It is possible that I have something in common with your Father as I produce up to five times that volume due to the removal of my Gallbladder and the consequent almost continuous flow of unconcentrated Bile.This can be very problematical.
Any and all of this cocktail can find it's way back up once the Lower Eosophageal Sphincter has been removed and the action of the Upper Eosophageal Sphincter has been impaired by surgery.
To some extent the problems are a question of hydraulics.
The length of the entire human intestine can range from 7.5 to 8.5 meters (25 to 28 feet). Think of it like a garden hose -- any bends,kinks,constrictions are going to cause problems.As peristaltic motion has been interfered with
it is necessary to enlist the help of gravity.Keeping the head as high as possible above the other end, straighten the tube by leaning back with the legs extended.Eating bolt upright is often problematic as the 90 degree bend at the waist seriously constricts the bottom of the pseudo-eosophagus and the pyloric sphincter.
I would have expected the videofluoroscopy to have pinpointed any problems but if this was done standing erect then it would have missed the issue I raise in the preceding paragraph.
12 weeks is very early days.You can be confident that time is a great healer -- but a realistic time scale is 12 months.
What age is your Dad?
How fit was he before the op?
Does he suffer from diarrhea?
What hospital carried out his procedure?
Where is his anastomosis ? [The join with the remaining stump of his original eosophagus]
Thank you for responding, much appreciated and very interesting.
I am unsure how much of the stomach tissue was re-used, all we were told was that they had to remove the entire stomach.
It is indeed reflux, just seems that it appears to be mostly bile that he brings up and either vomits or spits out. Interesting what you say about leaning back a little to eat as we had been told to sit bolt upright for meals, will give that a try.
The videofluoroscopy showed no problems whatsoever. I think the most concerning thing for us all is that the doctors seem at a total loss about why it's happening and how to stop it, at the moment we have one doctor saying the only option is to re-operate and move the join further down and another saying that is the last resort and that he is very reluctant to do it. If we were told this was normal it wouldn't feel so scary, yesterday they literally said they are running out if ideas and don't know what to do.
We do appreciate that 12 weeks is very early days, and were told to expect 9-12 months plus until he felt a level of normality. But the problem is he is having approx 100-200 calories at the absolute most per day. He has collapsed twice and hit his head both times.
My dad is 61, was very fit and well before this with no other health issues at all. He does manual labour work involving lots of lifting and physical exertion and would work 7 days a week sometimes. No diarrhea.
Woo allot to take in,, also told sit upright,, so will try leaning back also. Im 61, like IB84 father. I was not fit before OP, had lost 2 stone in weight before diagnosed in jan,,, put on a stone before OP as was told by dietition to eat eat eat,,,But now ive lost that and another stone in last 3 weeks. Great to hear the years post op, as have read much thats says like 5 yrs is a norm!!!!
Hiya - I'm very sorry to hear that your Dad is having such a terrible time at the moment - I think GutlessWonder has given a brilliant answer and I just wanted to say that although I didn't go through the bile thing that your Dad is experiencing but the first few months after my op (Jan 2013) were awful for me with all the reactions I was having etc and honestly my response was 'if this is living I don't want to do it' but all I can say is that DOES GET BETTER. Will my life ever be 'normal' again? Probably not. Is my life horrible and unbearable? ABSOLUTELY NOT! As Gutless said the first year is the time period where your body adjusts to its new 'plumbing' I lost about 4 stone after my op and have stayed down there - my reaction to that? I went on a shopping spree - might as well look as good as I can in my new, very different body!
Tell your Dad to hang in there - it's a long road but it does and will get better.
Oh and by the way - I got a PICC line for my post op chemo and it was the best thing I ever did! It took away the horror of trying to get a cannula into dehydrated, chemo damaged veins all the time and means that if you need to go into hospital quickly (fingers crossed that doesn't happen but I did due to being sick from the post op chemo) they can instantly hook you up to any meds / fluids needed with the least amount of fuss.
Hello and thanks for replying to me, really appreciate it.
You have hit the nail on the head, dad says exactly the same thing. At the moment he says that if he knew it would be like this he would have just "taken his chances", even though he knows he didn't stand a chance without treatment. It's just so depressing especially being an in-patient at the hospital for 8 out of 12 weeks, he just wants to get better and come home. Being in his own bed and with his own shower etc would make the world of difference but he is not well enough to be discharged.
The PICC line is being inserted today, he will have vitamins and minerals via this rather than chemo as it has been cancelled now since they would only do it for 12 weeks after the operation, that point has now passed. However as mentioned they did get the whole tumour with a clear margin and only found cancer cells in 1 out of 12 lymph nodes removed.
I was quite strong,,, and im very open re my cancer, treatment etc,, but like your dad, this last chemo,, i honestly was so down and so weak,,, had been told by a very close friend who had pancreatic cancer 4 yrs ago, but now it has come back and he is on Palliative care,, that it does not get easier, the more u have the worse it is,, he was so right,, and id never been so bad with the ulcers/thrush, cant eat, drinking also hard work,,, hence dehydration etc,,,and had said to husband, dont think i can continue this chemo,,, this LUMP thing is getting me down,,, but at the moment im due it next thur, i get where he was coming from, your dad.
Hi, I had a very similar issue. Turns out the chemo had damaged my pancreas causing pancreatitis. Get the blood amalyase checked a few times as the levels change and do not correlate with pain/bile.
Fatty foods will increase bile production, try switching to a low/fat free diet. Also see if there is a feed which is low fat, I had 'perrative', which is high protein.
Is constipation a problem, something like movicol will help good get moving if there is a blockage. This may also help with any air blocks in the gut.
Reassuring to hear that you had a similar issue although I am very sorry you have/had to go through it.
Pancreatitis is interesting, he did have a 6 week break between end of chemo and the surgery and during those six weeks (and before) he suffered no problems at all - he literally sailed through the chemo with no side effects at all. Do you think that it could still be chemo related after 18 weeks post chemo?
I did some research yesterday and found many articles and posts on the net about high fat diets promoting bile production, printed it all off yesterday and dad is going to speak to nutritionist today. Interestingly yesterday he managed to drink Fortijuice, which is 300 cals but 0g of fat, entirely fat free and had no problems afterwards. He also manages tea and consommé soup which are also fat free. Drinking the fortijuice yesterday was a massive thumbs up as it's 300 more calories than he's had in weeks. Unfortunately he still collapsed yesterday but thinks he just got out of bed a bit quickly.
Constipation is not a problem, nor diarrhea. When he does "go" it's not a problem just not very often but then he is barely eating so have been told that's ok/to be expected.
How many chemos did your dad have before the op?? Has he had any since? Just so much like what i have... Now they tell me to eat all high fat stuff, full fat milk,,, ive tried, cant take it,, so back on semi...but been having yogurts, moose's etc,, lots butter etc as told by dietitian? I tried the juices, and shakes etc,, but gave me diarrhea!! Thanks all for all this info,,,
My first pancreatitis incident took place 3 or 4 months post op chemo. It can be the case that the chemo had sensitised the pancreas and an event takes place which then causes the pancreas to react. For me, I think the chemo caused some minor damage and then a high fat + moderate alcohol was more than my pancreas could deal with a few months later. A few blood tests could rule pancreatitis in or out. In any case, bile production can be reduced by low fat and avoiding alcohol.
Thank you, very interesting indeed. I will mention it to my dad - thank you. He is starting to try low fat options today, has not touched alcohol since start of Feb. Excellent advice thank you.
Hi lb84 so sorry to hear of your fathers problems, i suffer a great deal during the night with reflux even tho i sleep in a special propped up bed but thank god never during the day as it is the worst burning sensation in the world and also carrys a massive risk of lung infection due to aspiration, my problem is massively reduced with medication if they have tried all the combinations i cant help but if they hav'nt get back in touch and i will give you my variables that helped me by 90%. good luck and allways know there are others out there willing to help
Dad doesn't describe any burning, he says it starts off shortly after eating feeling like a lump at top of his throat and then the coughing and retching starts, followed by vomiting or spitting out bile and other thick saliva looking stuff.
I would be extremely keen to hear the medications that helped you, he may have tried them but you never know a different combination may help.
and cholestyramine was the medication mentioned. Which has already been tried as you have explained.
Sometimes gaviscon can act as a barrier to help a little bit in the very short term, but it also sounds as though it is this over-production of bile that may be the main issue, and that this is a problem that needs to be discussed with the surgeons, along with the options they may have. It does sound like they are progressively doing tests to sort things out, but this is a frustrating process to go through for the patient. I was told at one stage that the body tries to heal itself and that the surgeons sometimes have to wait and see what develops rather than intervene. It did not help much at the time, but it did turn out to be true and I realise that now.
Bile is an alkali, not an acid, so the medication needs to be different from things like PPIs (such as omeprazole) even though it tastes vile and feels like acid.
It sounds like he needs to concentrate on what he can manage to eat and swallow in the short term. Hopefully his system will gradually settle down, helped by the explorations and tests done by the hospital. Try not to worry about the loss of weight; many people do lose enormous amounts but the body copes with it even though one looks dreadful at the time.
Thanks very much for replying, I will have a look of the link during my lunch break later on.
You are completely correct, they are doing everything they can and trying different ideas out it is just frustrating that its taking a little while, and when they said yesterday they dont really know what to do it was a bit frightening. Also conflicting opinions from surgeon/registrar and nutritionist make it even more confusing.
That is what we have decided to try now, just test out different foods and make a list of good & bad and see if a pattern can be worked out - thus far I think I am leaning towards high fat food being the worst but of course thats exactly what they want him to eat! But we are going to try a variety of low fat options and see if any improvement, better that he eat a lower fat diet than a high fat one which causes this horrible vomiting/spitting - if indeed it is that of course, only trial & error will establish if it helps. He was okay yesterday afternoon with a tropical fortijuice, which is 300 cals but fat free - he was really pleased that he managed it and has said he will try to have two per day, so 600 cals in that alone which is a massive boost compared to what he had been having.
I do believe that trying out different foods to see if anything is less irritating and allowing himself time to recover will eventually see an improvement, its just distressing of course at the moment as he says he has no quality of life and is essentially living in a hospital. We try to keep him positive and looking forward, and as with everyone there are good days and bad days.
I think that having high fat in his food will cause problems, because the body produces bile to deal with fat. I am going to sound more doctrinaire than I want to be, but please do not go down the road of thinking that he has to have high fat food in order to put on weight in order to regain healthy fitness. Concentrate on him eating what he can cope with, and the body will largely take care of itself, subject to an adequate supply of nutrition. Sugary (especially processed sweeteners) and high fat foods will be likely to give him touble.
This is why there are specialist dieticians to deal with these post-operative Upper GI situations, because in some ways it turns conventional nutritionist advice on its head.
There is a food diary that may help, and some advice on low GI index diets on the OPA website.
It is the nutritionist and surgeon who have been encouraging him to eat high fat food. They have been telling him to eat chocolate, drink whole milk, lots of cheese etc etc. I dont know if this nutritionist is a specialist for this type of problem, so I will try to find out perhaps.
I'll take a look at the food diary - thanks very much.
Hi, I had the same sort of problem after my op it turned out I had a leak in the new oesophageal which caused large abscess that was over twenty years ago.
Hi and thanks for replying, sorry to hear of your experience though. There was a small leak discovered approx 6 weeks ago, which led to an infection, but that has cleared up now and they say no more leaks and nothing on ct scan to suggest anything to worry about. Again very reassuring to hear you had your op over 20 years ago, the stats on this type of cancer are horrendous so its so great to hear of stories like yours. Wishing you all the best x
I had 3 months chemo pre and post op. I had my stomach removed 31 months ago and they found T3 N0 M0
I had some minor bile problems when lying a bit flat and sometimes difficulty in swallowing which generates a thick mucus until the difficulty subsides. I have found that my body has gradually adapted itself to the new regime. I lost 3.5 stone overall but finally have put on a few pounds !
Life is slowly returning to normal and gaining in strength and energy. I truly hope that things will gradually improve for your Father.
The major surgery shocks the body and it will take an awful long time to adapt and recover.
Thick mucus (as well as the bile) is exactly dads problem, sorry to hear you experience it too.
I think time is a recurring theme - time is the best healer and we need to try to be a bit more patient perhaps. The hardest thing for dad I think is that before the surgery he was honestly outwardly 100% fine, still working, going out, and living his normal life. Then he had the surgery, which of course was necessary and he was lucky to have it compared to some poor people who discover it too late, its just like he went in fine and came out like this - i think its hard psychologically to accept that the cure/thing that will help the most can make you so ill in the interim - if that makes sense.
I said to my husband yesterday if only the doctors would just say to us that its normal/ok and that it will be ok in the end we wouldnt feel so worried. But when they say they dont know what it is or why its happening its alarming. As mentioned above dad did manage a fortijiuce yesterday at 300 calories so that is a step forward and in the right direction.
I do worry that they have not proceeded with post-op chemo, would have liked one last cycle to dot the i's and cross the t's as they say, but he is really not up to it at the moment.
MY DOCTOR TODAY SAID, it normal, and due to chemo, and this type of op, hope that makes you feel better?
in reply to
My problem lump, i felt after the OP, before i was fine,,, but 3 months and still i felt it,,but since last chemo it is worse, like your dad has... but they have only delayed my next chemo by one week? I am dreading it,,, as was sooo bad after last one,,, and i dont believe this lump feeling gone by then,
Sorry to hear about the difficulties with your Dad.
After my esophageal myotomy, I had a tremendous amount of green, bilious material coming up through the NG tube. Zantac (ranitidine) intravenously helped decrease the production of the mucous/bile mixture.
After my esophagectomy, I had exactly the problem that you are describing even with solely jejunostomy feedings ( I could neither take anything by mouth or swallow from six weeks post-op), so these are possibly with solely J-tube feedings. My problem only lasted about two weeks and then improved. I now only have bile reflux occasionally at night
Hopefully your Dad's situation will improve over time, and perhaps a regimen of a drug like ranitidine could help. These drugs block acid in a different way than PPIs (which only block acid).
Thanks for the reply, I think it seems like trial & error with different foods and a lot of time and fingers crossed things will start to improve. I'll look up ranitidine - thanks very much for taking the time to write.x
My husband had his oesophagus removed almost 14 weeks ago after having 9 weeks of chemo. He had a lot of complications including 2 leaks and 3 infections and was in ICU for three and a half weeks and ventilated for 9 days and was in hospital for 7 weeks. He also has problems with his throat and coughing. He occasionally brings up thick saliva but not as much as previously. He describes it as having a tickly cough which you can't get rid off. He also attends speech and language and they think it is more a problem with his swallow. As you know the days and weeks after the op are very tough with lots of ups and downs. My husband also has to be careful what he eats as its a matter of trial and error. I hope that your father gets sorted as it's very frustrating and worrying to watch. My husband has just started his post op chemo and that itself brings other problems! It is just a matter of taking one day at a time.
Hi there - thanks for your message. sorry to hear your husband has had a rough ride, hopefully on the mend now and good news he is having post-op chemo - as horrible as it is at least you know they are mopping up every last bit of it. I really hope he feels much better soon. You are so right, one day at a time. Take care x
I still have most of my stomach but had all the symptoms. For 5 monthths I suffered and suffering puts it mildly . Then it dawned on me that the Jen feed could be filling the intestine so that the bile had no where to go but back up into the stomach. The opmprasol prescribed bf the surgeon didn't work. So I went to my GP. She agreed and suggested that I halve my feed and changed me from omeprasol to fanitidine, which I put through my Jen . Within four days my bile had stopped and I started to eat again. I hadn,t been able to keep anything. Down before so had stopped eating. Also the reflux in my sleep stopped, which made me wake up choking. I am still having problems with eating but I think this will get better with. Time. I hope this will be of some help. Good luck to yor dad . Keep in touch a-s let me know how he gets on
Thank you everyone for your replies - bit of an update for anyone interested.
Dad was referred to a consultant gastroenterologist at the hospital (he has been an in-patient for last 9 or 10 weeks - lost track!) who diagnosed grade 2 Oesophagitis following an endoscopy, caused by all the bile he has been bringing up since the operation in feb. Also found a bacterial infection in his intestine which they have prescribed antibiotics for now.
He has been nil by mouth since last wednesday, and this is due to end on Tuesday next week. After this time they are going to try re-training the digestive system (minus stomach!) by having a spoonful of starchy food like pasta for example, every two hours throughout the day. Also going to try feeding via the JEJ tube again, but this time very slowly and a much smaller volume, and they are adapting Fortisip juice to put through rather than the brown nutricia liquid feed he was previously on.
Have also prescribed some new drugs and altered the dosage of some of the existing meds. Dad has to try this for two weeks (starting tuesday) and after two weeks they will be able to tell if things are improving or not. If they are then continue in this vein gradually increasing amount eaten and after approx six weeks things should be on more of an even keel. If it doesnt seem to be improving then more surgery will be required to re-plumb the original surgery, although havent gone into detail as to what that entails yet.
So, we have a plan now and eager to see if it works. Dad is pretty down in the dumps now as it means another three weeks minimum at the hospital, he is so eager to come home but currently all nutrition via TPN and they cannot allow us to give him this stuff at home.
Fingers crossed we have success with this.
Also interested to hear anyones thoughts on the fact he is no longer a candidate for post-op chemo as 12 weeks have passed - is that really bad news? They took 12 lymph nodes and 1 showed cancerous cells. Should we be worried that he hasnt had the follow up chemo?
Why no chemo due to 12 weeks? I hope this all works,, as i need to get my DR to see this,, as nobody seems to be worried by mine, im getting worried...
I was in hospital for a similar length of time, and it does get very wearing, especially when your system does not seem to want to respond. There are some things that the body simply has to take its own time with though, frustrating though this waiting period is.
Re-training the digestive system as you describe is a logical way of approaching things - but be prepared for a bit of 'trial and error'.
Revision surgery does happen, but it would be better to try and work things out with medication. There are people like Prof Robert Mason at St Thomas' who is experienced at that sort of thing. It all depends on the details.
Some people do have the post-surgery chemotherapy; others don't. It may be an issue of balancing the benefits against the further problems it may cause for the digestive system. I suspect that there are not really any hard and fast rules on it - but there will be medical studies that tend to suggest optimum regimes. It is something to discuss in due course with the consultant as I am sure they will have considered the issue carefully.
Thanks Alan, I think if we could see an incling of progress it would lift his spirits immensely. So fingers crossed this starts to take effect over next couple of weeks. Would certainly rather this works (ready for ups and downs/trial and error) than for dad to go through more surgery.
Yes, am positive they have weighed up options re chemo at great length, and to be honest he is suffering enough as it is without adding chemo to the mix so ultimately it seems the best decision for him at the moment.
I have just been reading through all your comments and realize just how lucky i have been in comparison. I had my Oesophagectomy over 7 years ago and i didn't have any post op chemotherapy so I hope this can give you some confidence. I hope everything goes well for your Dad, I'm sure it will.
Thanks Steve it's really nice to hear of people with better experiences. We are just crossing everything that the new regime works so he doesn't have to go through more surgery. Hopefully this will do the trick!!
The trial of tiny amounts of food and altered drugs did not work, problem still persists. We have been told all the way along that referral to the gastro consultant and whatever he wanted to try was the last option before revisional surgery as they have exhausted all options.
Gastro consultant now recommends revisional surgery, not what we want in an ideal world but have prepared ourselves for this as they have repeatedly said this is the plan if nothing else works.
Today the surgeon has come round to discuss the report passed to him by the gastro consultant which recommends the revisional surgery. Surgeon now says this is too risky and he is not prepared to do it. Now saying they want to insert a nasal feeding tube and he will be fed like that indefinitely, at some point his digestive system may correct itself and he may be able to eat/drink orally in the future, but equally may not.
I obviously dont want dad to have more risky surgery, but feel upset it was outlined as an option if it clearly was never going to be done.
Currently waiting for an x-ray, if this is in line with what they expect to see then they will insert the nasal tube and begin feeding via that. Then perhaps discharge in a week or so if all seems ok. After nigh on 4 months in hospital dad will be pleased to come home, but I cant help feel that the problem has not been recitified and its taken an awful long time to get to a point of talking about discharging him in the same state he went in there in. I cant say I feel that they have been really on the ball, goes for weeks on end with no contact or decisions from the people who actually have authority to make them, feels like he has been forgotten about. Its only the fact that the ward nurses (without prompt from us) escalated his case to the senior matron and she is apparently quite a severe woman who seems have given everyone involved a bit of a push to get things moving.
Looks like just one of those things, apparently dads problem and severity of symptoms is very rare and the top surgeon has said in his entire career he has only come across one other patient in the same situation, and with him they did the nasal tube and after an "awfully long time" things calmed down a bit. Its just not much quality of life for dad, I know him and he wont see anyone or leave the house with a tube in his nose. Very hard to think about this time last year when he was working, going out, going on holidays and leading a very active life.
So thats it, no conclusion really but have to count blessings that hes still with us and was lucky enough to catch the cancer at a time when they were still able to remove the tumour. Its easy to forget where we would be if he had not had the surgery in the first place, need to try and remind ourselves of that when we feel upset and angry about the complications of the surgery.
Wow this all feels like such a long time ago for me, this was years ago and we have come a long way since then.
I do believe that a lot of dads symptoms outlined above ARE normal after such major surgery and only natural that things will take a long time to settle down. I think in my dads case it was just the severity of it which is abnormal, he ended up staying in hospital for almost 6 months straight and was fed via a tube going directly into his bloodstream (TPN) for a long time. Two years after first op they operated again and corrected the problem which I understand was something to do with where they had created the join to what was left of the oesophagus and the intestine (all stomach was removed during first op). Anyway, after this second major surgery he recovered reasonably well and in time began getting better.
He now manages to eat and drink pretty much normally, can’t have anything too dry but other than that he’s ok with most things. Can only eat small potions and doesn’t manage enough to put any weight on so he is still very thin but enjoys all his old favourite foods and a few beers here and there so overall on the eating and drinking side of things it is all much better now but just took a long time to get here.
Regards to no chemo after 12 weeks following op - what I meant there was the plan for dad was pre-op chemo to shrink tumour, which he had. Then the op, which he had. Then more chemo after the operation but in dads case he was too ill to manage any more chemo and after 12 weeks they said the benefit of the chemo (which was to mop up any stray cells left after the op) would not be done as it should be completed soon after surgery to make it worthwhile doing as part of a post-op program.
My dad was diagnosed Aug 2013, it’s been a rough journey but he is still here, eating/drinking and enjoying life, still going to work from time to time and has seen his first two grandchildren arrive so five years full of massive highs and lows but we are all so grateful he has been able to fight this hard for all these years and will continue to do so because we believe the most important thing is to never give up hope.
We wish you all the very best on your unwanted journey, it’s like a club nobody wants to be part of! Stay strong and take each day as it comes. Xxx
Ho, thanks.. so still hope then,,, im still worried abt the next chemo, and i hope this lump goes by next week, but cant see it happening,, so ill take the next chemo,, will be at a reduced amount, strength he said,,, and hope this lump goes,,, soooo glad your dads ok,,,,, and id love to be able to eat again, though i know never like before.. Our anniversary this month, and would love to go eat out,,, id have to just eat bits of his dinner, as can eat a dinner myself even before this problem got worse,,, will have to wait see how i go i suppose, thanks again xx#
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