The Stomach that got away

[DaddyPig]

In October/November 2011 I was diagnosed with Barrett's Oesophagus which, shortly after, changed to confirmation that there was a cancerous cell present within my oesophagus.

Following an attempt to get rid of the lump endescopically, it was decided that a course of chemotherapy would be required. After that it was proposed that a part of my oesophagus and stomach be removed.

Chemotherapy went fairly well, and I managed to work through the course. There were quite a few times where I felt tired, sick, etc, but my family and work commitments gave me the strength to carry on.

Towards the end of the chemotherapy my feet and hands started to turn red, then sore, then very sore. My feet felt very painful to walk on, and my hands gradually started to shed skin to the point where I could pull big pieces off in one go. Not the cleverest thing to do, as it hurt even more then, but I've always been one to do things like that.

Because of these side effects, the chemotherapy was halted a couple of weeks early; as it turned out, it hadn't done anything to the cancer anyway. I was booked into St James' Hospital, in Leeds, for surgery on the 2nd May 2012.

If my wife hadn't have gone with me, I would have been far more scared, but her presence made me feel that normality wasn't too far away, and the expected two weeks stay wouldn't be that hard.

The surgeon and his team were excellent, showing a level of care and concern that I hadn't expected; this too helped me as I got ready for the estimated 6 to 7 hour operation.

The main thing that I remember about the operation was the stockings, which I hate with a passion, and the sexy paper underwear; wow I must have looked hot!

I woke up very fuzzily on the High Dependency Unit (HDU), to be told that the operation had been completed. I had a nice button to press that shot an equally nice amount of morphine into my body for the pain, and I felt that things weren't going too bad.

A day or two later, following the normal HDU procedure of 2 hourly observations, the surgeon came to see me. Unfortunately there had been a leak, and the stomach and oesophagus that I had left were both infected. I was asked for, and my wife was asked for confirmation, permission to operate again immediately. As the option of not agreeing to the operation was the very great possibility that I would die, I didn't have much to think about. Within a couple of hours I was taken down for the second operation in the space of two or three days.

This time they kept me asleep for longer, and I woke up in intensive care; the only patient there at the time. The nurse was brilliant, and she spent time talking with me until my wife arrived.

The operation had been a success. All of my oesophagus, and all of my stomach had been removed. My favourite saying became 'I don't have the stomach for that.' Possibly not very funny, but I found it quite entertaining, and it was a way of trying to come to terms with the fact that I no longer had internal organs that I'd taken for granted for almost 50 years. When your tucking into a double cheeseburger and fries, who gives any thought to the fact that it might be something that you may not be able to do for a long time in the future?

I spent two weeks in HDU which, due to the fever and morphine, would make a story all on it's own. I had a further operation; a much simpler one designed to aid future reconstructive work. Following transfer on to Ward 82, and another fortnight of recuperation and learning how to operate the feeding apparatus that would provide sustenance for me in the future, I finally left hospital on 2nd June. Although I had received nothing but the highest standard of care, I was very emotional at the prospects of being able to return home.

It would take too much space to describe events in HDU, my feelings regarding my feed pipe, and the gunge that goes through it on a daily basis, as would the love/hate relationship that I have for the stoma bag attached to the hole that I have in my throat; kindly provided during one of my operations so that I could experience liquids.

As I write this, I'm trying to prepare myself mentally for what I hope will be my final operation in just over a week's time. Without wanting to appear melodramatic, or cowardly, I have to admit to being scared. I'm not afraid of the operation, I'm going to be asleep for the vast majority of it. It's more to do with being away from the comfort zone that is home; my wife, my two four year old sons. It's also to do with, what will life be like after the operation to reconstruct my stomach. I'd got used to being fed via my Jejunostomy tube. How will my new stomach affect me in the future?

Only time will tell!

[Hidden]

I think we have probably all had a very bleak time in hospital. Probably our memories tend to screen out quite a bit of it, but then every so often the memories (and the feelings we experienced at the time) come flooding back. With me, I tended to think about the experience in the sleepless small hours of the morning, but I can understand that the prospect of returning to hospital does also trigger off the awful memories.

If it is any consolation, I had to return to hospital to have things re-done (my operation was a repair of the oesophagus rather than an oesophagectomy) but it was not so bad second time around because things tended to be better because I had had the experience. You have not got much choice: you just have to get on and bear it as best you can, but take some consolation that a dose of anxiety and fear is quite natural. Once you get on the ward you may well feel a lot better about the prospect, oddly enough. This is a very personal view, but I believe that if you think about things beforehand and acknowledge your fears (as you appear to have done) you will then have a greater degree of self-awareness, courage and strength to get through it. These operations have a mental journey that runs alongside the physical recovery.

If you can share your fears and problems with your wife you will probably find that you can mutually support each other more effectively; she will have her own fears as well, and the conventional wisdom is that it is best not to try and shield each other too much from what you are both worrying about inside. Placing your trust in the hands of others, doctors included, is not easy, but sometimes you come through stronger because of it.

It sounds like this operation is designed to improve your situation, so you may well find that it acts as a milestone after which things get better physically for you. There are quite a lot of people who have quite a reasonable quality of life after their stomach has been removed as well as their oesophagus. Nobody thinks that recovery is easy, and your eating pattern and probably your weight level will be different, but you can assure yourself of having a fair prospect of seeing your sons grow up. There is a lot of information about on diet and nutrition that can help.

[patchworker]

You have had a very hard time but it sounds as if things should improve after your next operation.

You hint at morphine nightmares in HDU, If they still bother you, have you joined ICUsteps?

[racy]

You've had it rough mate but hang on in there. There'll be a lot of us thinking of you and your family.

[Phil5]

Hi,

I became paranoid with the morphine in the ic unit so they changed it to a synthetic substitute.

You have been through a horrendous time but as Alan says this next operation could be the turning point.

I am praying for you.

Best wishes,

Phil

[juliamac]

Hi there

Thanks for sharing your experience so far. You took me back to some fairly dark moments and made me feel so glad to be 5 years on from it all, feeling better than I ever imagined I could and looking forward to many more years of improvement.

I now get scared much more easily....before this cancer I think I felt fireproof, so I think you are very normal to be scared...Feel the fear and do it anyway! you have talked it through and know its going to improve your condition.

Wishing you and your family all the very best.

Julia

[DaddyPig]

In one day I've received good wishes and advice, from more people who have been through the same things, and who have shared the same feelings, than in all of the time since I was diagnosed.

I sincerely thank everyone for taking the time to comment and, as with most things in life, it does feel better to know that your not ion your own.

I particularly empathise with Phil5's comments. Whether it was the morphine, lack of regular sleep, fever, just feeling unwell, or a combination of all, I believed that I was some sort of King of the Elves, and that there was someone, or something, belonging to another group, who were going to assasinate me.

Looking back now, I have to laugh, as have others that I've told the story to. Going through it however was far from funny, but I know that it wasn't real.

Neither was the night that I thought I was in the storage room of a ship, even though I knew I should be in HDU. Somehow that led to me catching one of the may tubes I had attached to me, which ended up pulling my canula out. At the time I wondered why, on board this ship, there were four nurses that suddenly appeared to look after me; but in one form or another the nurses and doctors were always there to help, even if maybe I wasn't always aware of it while in hospital.

The one constant amongst everyone's comments is that the surgery next week is necessary for, and will lead to, a more normal life. I completely agree with this. Having not had warm food to taste since the very start of May, it does feel like I'm living in a culinary nightmare; something I'm sure that everyone on this site has experienced.

The only thing that has eased this, for me, is the stoma bag on my throat. I was told that it would at least allow me to have the sensation of drinking, even if the liquid was only going into the bag. I was already pushing the boundry of the stoma bag while still in hospital; with a variety of soft drinks and iced lollies. It was beautiful in the heatwave that we were having at the time.

Once I got home I stretched things even further, including beer, lager, Magnum Classics, boiled sweets and, my favourite, Mint Vienetta. Anything that I can suck until it's just liquid allows me to keep in my mind at least some of the tastes that I've enjoyed over the years.

Unfortunately there are no boiled sweets with the flavour of pork chops, beef, steak, peas, stuffing, yorkshire puddings; the list is endless.

Because, at some time in the future, I want to enjoy these tastes again, and being able to sit down to food with my wife and two sons; simple pleasures, which only people on this website understand how really important they are, I have no choice but to have the reconstruction.

Again I'd like to thank everyone for caring enough to offer their advice

Best Wishes

Paul

[Bernadette]

Your sense of humour will see you through...I had lots of smiles reading your report..we are all thinking of you. When I had my op 4 years ago all I remember is my dear Dad was dying in the floor below mine, they decided in their wisdom to give him an operation whilst I was in hospital but he had a heart attack within 2 days and died on the day I left hospital..as an only child I was heartbroken. Chin up..its all you can do..whats that saying, stay calm and carry on. Bernadette

[golpharm]

Hi there

I know precisely how you feel because I was diagnosed with oesophageal cancer in 2006 and was operated on in that year. Things did not go according to plan and I needed a second operation 48 hours later and I ended up with a stoma bag on my neck and spent a considerable time in ICU and a total of 3 months in hospital in total. I had a stoma bag on my neck like you and was tube fed through my stomach. This lasted for 9 months but in 2007 I was admitted to a hospital in London and my colon was joined up with the remains of my oesophaqgus but it was done on the outside of my chest cavity but under my skin.

Thankfully I now lead a near normal life and enjoying some golf and life in general.

So, go for it.....it really is worth it!

[DaddyPig]

As I read the replies and comments on this website, I'm struck by the number of people who've had to work through this illness. If you'll pardon the expression, the 'guts' of all concerned are also clear.

Although not all the same, the experiences, written about by everyone, console me that, once I'm through the period in hospital, over time things will look a lot better for both me and my family.

Again I'd like to thank all concerned for their comments and wishes