hi all thanks for your replies so far, we were told after the surgery that there was signs of node involment but they thought the chemo before the op cleared them and there were cancer in the blood vessels after the op aswell, we are asking as gerald oncologist was changed the week of his op and the new one was back logged, he never was offered it and now they are putting of the ct scan he needs to see it the cancer is localised as they are back logged again!!! and we spoke to the nurse specialist who wouldnt comit herself to anything and sounded hot and bothered when questioned about it. she did say that its possible gerald should of had the mop up as he reacted so well to the chemo before and the surgeon said he was the fittest he had seen post op, so please continue to help us

hope all is well

ben i hope u have u have alot better weather than this very cold snow,

and steve thanks for ur replies

sorry i cant mention every one or i would be here all day, i hope every one is well or as good as it can be.

Hi everyone hope you are all as well as can be,  dad has his 6 month check on Monday,  cant believe 6 months have passed since his operation ! the news is not great , he has had a suspected stroke and is booked in for  a scan on his head this week, surgeon also wants a scan of his dads chest, not really sure why but dad is dreading being told it has spread after all he has been through the past 6 months.  He is also going in for  his 6th oesophagus stretch on Tuesday and also they are going to remove a little sack thing that has formed on the side of his oesophagus where food keeps getting stuck. It feels like since the operation he is drifting from one heart ache to another, may be our expectations are too high.  One day he feels ok then the next he is sooooo weak,  also he keeps vomiting, totally unexpected without any warning, is this normal ?

Li I am really sorry to hear about Gerald but he is obviously very strong with a great deal of fight so lere's hoping he has the physical and mental strength to forge forward,  he has a lot of people here all thinking of him.  My dad never got offered chemo after his op, but he had no contamination in his nodes, his diagnosis was T2N0,  surgeon told him yesterday his tumor was 30cm from his front teeth !,  god know why he told him that !

Hope everyone else is ok and best wishes to you all for 2010

Janet

Hi Janet

I’m very sorry that your dad is feeling so poorly and has had a suspected stroke.  I can understand that this is a very anxious time for him, especially if he’s worrying whether the cancer has come back.  It is a very difficult time waiting for tests and results, but with suspected strokes the patient is seen pretty quickly, so at least the scan is this week and you can rest assured that the doctors are acting quickly. 

As for the sudden vomiting, in many cases this is normal as most of us have been through this phase at some stage of recovery.  However, sudden vomiting can also be a symptom of a stroke, together with other symptoms.  Was your dad aware of any other symptoms?  My mum had a minor stroke that caused her to vomit suddenly and she had slight dizziness and headaches which was unusual for her.  However, the doctors never did find the cause of this stroke and it was so minor that nothing appeared on the scans.

As for the comment from the surgeon about the tumour being 30cm from his front teeth, well the location of the tumour is measured by the distance from the teeth, so at 30cm that would place it very close to the stomach.  You can find this info on this link under the ‘Diagnosis – clinical evaluation’ sub heading: http://en.wikipedia.org/wiki/Esophageal_cancer

I wish you all the very best and will be thinking of you this week so let us know how your dad gets on.

Crystal xx

Hi all.

I am new to this so please bear with me.....my husband had an Ivor Lewis  a year ago they removed nodes and luckily for us there was no cancer in any of them, which woz fabulous news. I woz wondering whether he will ever get back to how he was? he has lost about 2/3 stone in weight and really struggle with his meals as they are so small, he has never been what i term a food person so trying to tempt him is really difficult,and he is just so fatigued .He went back to work in October but struggles doing 3 days a week. Will he ever get back his energy its so sad to see him looking so down as he is so frustrated that he cant do the things he used to. I tell him that he has come so far and its still early days yet and to think back to when he came out of hospital - but its easy for me to say. Flippin eck i am rambling now lol but would be most grateful for your feed  back 

Thanx

susie blue

Hi Susie

Welcome to the forum, I see you have joined the group forum, you will see from this thread and the group threads there are many of us who can share their experiences with you. One year is still not a long time after this operation, it really is a massive thing to go through, however it does get better over time and your husband will reach his new normal, for many of us what was normal before the operation may never be the same, the inportant thing is that he is improving even if this seems like a long time. There are some good tried and tested tips on energy food members have developed over on the group forum that you may like to try out.

Take care

Steve

Hi Susie blue

First of all welcome, and its great news that after surgery there was no lymph node involvement and that your husband is now well into recovery. 

You’ve probably read some of the posts here and in the oesophageal group so I hope the info and various discussions there have been useful to you. 

It is extremely difficult to get back to how things were before the surgery and I don’t know of anyone that has.  What we tend to agree on is that we now have a new normal, which is vastly different to how things were before.  Generally speaking it does take about 12 months to gain weight, but obviously, if eating is still a problem then fatigue will also be a problem.  Also, dumping syndrome can cause severe fatigue and that is something many of us have had and I suffered from for about 18 months.  Everyone is different in their recovery although we all have similar symptoms and side effects, so it’s difficult to assess duration of a particular problem.  For example, I was diagnosed with cancer-related fatigue just five months ago, which is two years post surgery, so this can occur at any time.  Generally however, most people do recover from the fatigue and eventually regain their weight very slowly.  Since I’ve had this fatigue my weight has piled on because I’ve been unable to exercise, so sometimes it seems like a vicious circle.  I would say not to worry too much and the main thing for your husband is not to be disheartened.  Things do get better, there are setbacks, but gradually he will become used to his new normal.  If you can find the things he really enjoys eating and increase the fat content a little, he will gain the weight.  I’m sure he’s having annual check-ups, but if in any doubt always see your GP or consultant.  I wish you all the best and feel free to join in any time.

Crystal xx 

Steve & Crystal

Many thanks for your advice,can u assist me with a bit more? do you find you cant eat late evening, as since Graham had his op he tends to eat his main meal before i return from work so we dont eat together and i worry because i think its important to eat a balanced diet and not just eat unhealthy food but he just wants to eat what he fancies and to be honest its far from healthy.....mince pies, biscuits, you get my drift????? lol.I remeber thinking when he was first diagnosed right get the chemo out of the way, have the op and the rest will be easy!!!!!!! how wrong could we be, to be honest the recovery is the hardest thing he has faced, its getting his head round this new normal  its the OLD normal he wants, but we have to look at the alternative to the new normal, and that would be not to have him here.... and i know which one i prefer. 

Thanx again it really does help having someone to talk to who has been through it

lotsa luv

susie blue xx

Hi Susie Blue'

Your new normal terminology is spot on!! From my own experience the new norm is whatever you can eat and if you enjoy it then its a bonus.The main ingredient of the new "diet"is  time. It has been  13 mths since my op and only this far down the line am I starting to see food as food again. Appetite comes and goes and it is hell for my partner with the wastage.Weigtht is another issue but I have found keeping a strict diary is my biggest help as I can refer back and see the progress  --  don't rely on your memory.  Look forward to the new normal.

Hope this helps. Cheers Ben.

Hi Susie blue

Diet is the trickiest part of recovery since it affects everything else concerned with health and recovery.  It also affects everyone differently.  As Ben has said, appetite fluctuates and there can be a lot of wastage initially.  For me personally, before surgery dinner was always at 7.30 to 8pm.  After surgery I found myself eating masses of cakes, ice cream, biscuits and general junk foods every single day at around 6pm.  All this sweet food contributed to the dumping syndrome but did help me to gain weight.  Unfortunately, these sweet things, which incidentally I hardly bothered with before, became highly addictive and I craved more and more.  A balance diet is obviously very important, but sometimes it’s impossible to eat many things so for the first year I ate just what I wanted to gain weight and then reverted to a more healthy diet.  I still have to eat early as acid reflux is a massive problem if I eat later.  Also, your husband will gain weight eventually, everyone does, and in fact, because of the cream meringues, I’ve had to join Slimming World!!  My consultant is astonished and says it’s a first, so it shows how things turn around.  Just watch those mince pies!

Best of luck

Crystal xx

Hi everyone, I do love reading your chat. Welcome to susie and I hope you get hubby sorted, dont men make terrible patients? That should start something, ha ha.

I came on to see if anyone had heard from Julie Ryan? I havent een a post since New years ve and I know she was worried about her mum as well as Hubby, If you are reading Julie we would love to hear from you. Thinking of you, love leisha xxx (((((((((((((((((((((((((((hug))))))))))))))))))))))))))))