Surviving Oesophageal Cancer

Hi Janet

Sorry to know you dad is still having troubles, but the truth is for the majority of us things will never be normal again from a physical or psychological sense. Your dad needs to find his new normal, which will be so different from the one before the operation. If your dad is raising his bar too high he will never get over it, if he can try to think of his life as day one after the operation and start judging every achievement from there he will have a fighting chance of reaching his new normal which is evolving day to day. The food pipe that was removed had a job to do that was to take food to the stomach, now a large portion of this has gone and been replaced by stomach that has been stretched, the stomach is not designed as a food pipe it’s job is to help break down the food so the intestine can draw nutrients from it. There is now a short passage from the mouth to where the remaining food pipe ends and the stomach now begins so it is no wonder he is having difficulty with his swallow.

 I am 20 months post op and still coughing and choking like hell on occasion but it does get better and time is your greatest friend as all the stretching in the world won’t always help because in most cases eating can never be the same. I have learned the hard way about aiming too high as all this does is frustrate you and pull you down, as soon as I lowered the bar I achieved more success and am now reaching my new normal. I know this illness can return at any time, but the chances are it won’t manifest in the same way as before so I do not concentrate on my eating habits but would be more concerned about other symptoms that I am unfamiliar with.

 Don’t let your dad’s fears pull you down, all you can do is be there for him, all the worry in the world will not change the final outcome but will make you ill, so don’t let this insidious disease get the better of you. Many people think this operation is the be and end all, but if you are lucky enough to be a candidate it is only the start of another whole lot of trouble whether it is from the bigger Ivor Lewis or the less invasive procedure this operation cannot be underestimated and is a real big deal that can have detrimental affects on a persons physical and mental health.

 I had been suffering for a long time with choking when eating which was stopping me from getting food in and making me very weak, a couple of months ago I started taking a Zantac before going to bed, the result now is I am eating more choking less and have put on 3kgs, the medication has helped sooth what’s left of my food pipe making it less raw. I am not saying this will work with everyone but it just goes to show a little experimentation can go a long way; when I told my surgeon he said there were APIs that I could be on to do that job but to stick with what I am using if it is working for me.

Take care

Steve

Hi Ben

Pleased to know you are having a good time with your daughters coming to visit and even more pleased your pain is under control, I bet that is also a relief for Sharon knowing you can enjoy your Christmas.

Hi Leisha

I hope you look in when you can and that you and Ed are having a good time away from the winter blues.

Hi Crystal

Thanks for you lovely card, I hope you and your loved ones are well, unfortunately I have had some sort of flu but am on the better end of it now, although a few days off work have helped.

Hi Li

Glad to know nothing too serious for Gerald, you know you should stop worrying too much and enjoy your Christmas.

To everyone else looking in also have a truly wonderful Christmas and a happy New Year.

Steve

hi all,

Gerald had his dilation today all went kind of ok, i say this because the dilation part went well but they went deeper into the stomach to see if it was defently the dumping cause gerald stomach pain and they can across two lumps that look like ulcers, they have taken a biopsy and told geral that there is a chance it has returned we now have two weeks of playing the waiting game all over again. has any one ever had it return in the stomach or had these ulcers or any thing simular?

any way i hope evry one is well or as good as they can be and enjoying there xmas

take care

li

just a quick thing does any one know if a second op is available for stumach cancer after a total oesophasectomy?

let me know

li

Li

Sorry to hear your news, and there was me telling you not to worry too much, let us hope they are just ulcers and nothing more. The waiting game is so hard to take but the fact they say they look like ulcers is good reason to be optimistic.

Stay strong,

Steve

Hi Li

I’m sorry to hear this news but as Steve rightly said before, it’s just very easy to worry unnecessarily over many post-surgical symptoms, as there are so many of them.  Obviously the doctors have to check this out but there might be some room for optimism as the doctors have said these lumps look like ulcers.  As for a second operation, well I think that might depend upon how much stomach is remaining or the location of the tumours.  In my own case, my consultant told me immediately after my surgery that a second operation for whatever reason would not be possible, but I don’t think this applies to everyone.  Usually, chemo and radiotherapy would be considered if further surgery is out of the question.  The waiting is hard, but it is entirely possible that these nodules are benign.  I’ll keep my fingers crossed and hope that all is well with Gerald.

Love Crystal xx

Hi Li

Really sorry to hear about Gerald, but try and stay positive it may just be ulcers,  try and enjoy christmas and put it to the back of your mind for now,  it must be an awful time for you all my thoughts are with you.

My dads receovery has been a long haul, he has now had 5 dialtions,  and been opened up again twice due to ulcers and problem stitches inside ?,  my dad is convinced the cancer has spread to his lungs as he has had a terrible cough now for weeks. He has his 6 month check on 4/01/10 and his 6th dilation booked 12/01/10 - he still struggles eating and is mainly on shakes again.

Steve your quite right about a new normal for my dad ..... that really made sense and gave me the kick up the ass I needed,  also he and the whole family are very lucky as there are families who do not have their loved ones this christmas !

Crystal - how are you doing hope you are well ?

Janet

Hi

Advice needed on Dialtions i am on year post op. And my consultant has said he would book me in for a dilation in januray. is it true that once you start having these you will need them frequently or is once enough?

Maggie

Hi

My dad has his op end of Aug and then has had 5 dilations since october and is due another one on 12th Jan, I think everyone maybe different but they do not appear to work for my dad, they usually put the balloon down for 10 mins at a time,  he had one done last week and the doctor who performed it told him he didn't think it was working and suggested he speak with his consultant ?,  dad is fine afterwards just a bit of a sore throat for a few days.  THe last time he had it done the doctor mentioned he may have dismotility ? which I have not even looked up what it is as I can't cope now so don't need anything more to worry about, just want to enjoy our family for christmas now , and  we will look at next years challenges after the festive season is over.  Hope all goes well for you Take care

Janet

Just read my last few posts and have typed incorrectly, one of dads ops was dues to a large abscess on his internal stiches that had burst not an ulcer.

Actually now when I take a step back and look at what my dad has been through over the past  months he has actually made some progress.  Its been a long road for him and he has now lost 5 stones, but he is still here, probably 1/2 the man he was both mentally and physically but he is here all the same and we are so glad to have him.  WHen he was diagnosed on 22/4/09 I would have given up everything I have to keep him until christmas, now christmas is nearly here I want him until summer !, selfish I know, but hte thought of him not being here is so painful I cant even imagine it.

Janet