Before I had my oesophagectomy, the surgeon warned me it was a big op., and would take months to recover from.

[patchworker]

But I didn't really understand just how big, how difficult it would be. If I had understood, I would still have had the op., because it's the best chance of surviving, but I wonder how many people really did understand? Perhaps only those who found this site before they had the op?

[AndrewB]

My cancer was found early and I was never ill with it. I then had the op and was SO unwell. Nobody warned me just how ill I would be! However every week After the op I noticed a change for the better.

[hunsdon]

Like yourselves I don't think I really took it all in how big the operation would be and the long term recovery would take, but with a lot of help from the support team and family and friends I am now more in control of my life again, 22 months post op, back to work and eating little and often and this is all thanks to my local hospital as well.

Tina

[Markxj]

Like you I was warn'ed it was a big op but five years down the line still trying to understand the dips in energy and 'dumping' when I get very cold and sometimes have blacked out. Unfortunately I had a rocky start to my recovery as my oesophagectomy broke open only days after the op and had to go back down. Seven weeks in intensive care of which both lungs collapsed and was in an induced coma for six of these weeks threw back my recovery. Then after another six week the same thing happened and I had to have a stent fitted. After which the end of the stent came off and managed to lodge in my chest cavity so four months after that had to have the olive removed. HOWEVER slowly and little steps week by week my life is just getting back to some normality. Life is very precious and would not be here now if I did not have the original op. Light at the end of the tunnel, hang in there.

[sallym]

It is a long difficult road,with many blips. Did I ask any questions before, no I already knew my chances of survival were practically nil, but the operation was a tiny glimmer of hope.

I had nothing to loose. Nobody believed it would work but my surgeon hoped to give me 3 more years. Here I still am,nearly 20years later.Life is different but I have never forgotten looking at a teaspoonful of mince and wondering if I would ever eat again, looking over my shoulder for something to go wrong. It takes a lot of patience and time to recover but I've watched my family increase and focused on thing I was always going to do tomorrow!

So good luck with your journey and remember you are not alone Sally

[hilr in reply to sallym]

Wow Sally, 20 years on is really encouraging, and I guess 20 years ago surgical procedures and after-care weren't as advanced as they are now. You are an inspiration to all if us newbies. Thank you

[geranium1111]

Hi

When I was diagnosed I knew it was serious but was contacted by my sister-in-law's employer who had gone through the same thing and he went through the various procedures I would have to go through along the way and was very supportive and encouraging - it did help although scary when he said that your lung has to be collapsed etc. so I was under no illusion about the seriousness of it.

I am 2 years post opp. now and doing fine without a lot of side effects mentioned on this site - playing golf every weekend at 73yrs young.

About 12 months after my opp. I was contacted by my wife's hairdresser asking if I would visit her father who had just been diagnosed the same - which I did - I tried to play down the nasty bits but he contacted me several times and afterwards told me it did help to chat to someone who had gone through it and he was better prepared for things as they happened.

I am very grateful to the surgeon and team at the Churchill Hospital for their wonderfull care and treatment.

Regards Mick

[strangetimes]

No I didn't know how big the op would be ,how life changing the after effects .

I'm afraid I feel angry at the way the surgeon and oncology team ,specialist nurses ,et al all minimised and tried to play it down .

I can still hear the top bod consultant ( professor actually ) telling me how I'd be able to dig the garden afterwards ,the surgeon telling me that I'd " just have to eat smaller meals " ,the specialist nurse going on about the roofer who was back at work 6 weeks later .And the latter's inabilty to find anyone at all ( despite my repeated pleas ) who had had the op and who could talk to me . Or even suggest a support group . Apart from a drop in bowel cancer group .

Of course I understand their position - how they have to relate to you as a paper case study rather than a person ,how they can't scare you .

But I knew they weren't being honest - it had the effect then of making me feel that they were poo pooing my anxiety ,judging me as a wimp . Plus I didn't trust them then and it makes me distrust doctors/surgeons/professors now .

But the nurses ,when I was in having the op ,were simply fantastic .

[bmwhatchback in reply to strangetimes]

.like you we have had no help and certainly no specialist team to call on. Also our gp surgery has offered nothing al all My husband who had the operation is not unduly concerned but myself as a carer find it difficult. On a nore positive note I have just made contact with a specialist nurse from acomplelely different hospital who has offered support and its trying to arrange a meeting with a dietician. All this has been done through the opa site Gutsy which is the Worcester branch.

[Stevewellswood in reply to bmwhatchback]

The specialist nurse i think you are talking about was origanly based in Chester and was part of the north Wales gutsy group she was the best and really helped me so much it was like having my best mate looking out for me she is a truly special person and so dedicated to her work

The specialist nurse are the key to everything in my experience and people should use them as much as possible for advise and help

[Danko]

It is interesting how all of our experiences seem to have differed. I didn't want to know too much about the op and the after effects while I was having my pre op chemo. I suppose I was putting my faith in the medics and otherwise preferred not to have more to worry about. It was only about three weeks before the op when the specialist nurse told me what would actually happen. It was a bit of a shock but I only had a short time to reflect on it before the op. I had a lovely holiday, swimming in the Med, getting a tan etc, so that when I went in for the op I felt really fit and I think this was crucial.

Post op I convinced myself that I would recover in 3 months, return to work and beat all the predictions. It hasn't worked out this way and I have had to be more patient than is my nature. I have learned from this. It has actually been more difficult for me to deal with the lengthy recovery period than the op itself when one can only focus on one think, survival. I am now coming to terms with the situation 16 months on and starting to make plans for the rest of my life with a more positive mindset.

[Thorno]

I think I was fully informed and knew what to expect but I don't think I could possibly have imagined what it was like in reality. My team were very open and honest about it but I really don't think any words can prepare you for what it's actually like. I'll never forget the first time I tried to brush my teeth after the operation - I couldn't lift the brush to my mouth because it felt too heavy! It has taken me three years to get to just about feeling fit enough to work full time. My surgeon told me that open heart surgery was a breeze compared to it and I completely understand what he meant.

[patchworker]

Thorno, You wrote about the difficulty of brushing your teeth. I couldn't brush my teeth for several months after my op. Partly because I was too exhausted to stand at the washbasin, but mainly because I couldn't bear to put anything in my mouth. I was on a ventilator in ICU for eleven days, and the horror of having it down my throat made me gag for months afterwards if I tried to use a toothbrush.

I know what you mean about having no strength in your arms, Obviously I couldn't speak while ventilated, but I was given a pen and paper to communicate, but I could hardly lift the pen, and certainly couldn't lift my head to see what I had written.

That was three years ago, and I'm alive and thankful, Maybe It's just as well we didn't fully understand.

[Bernadette]

Not a good experience violet queen..when I met my surgeon at The Churchill hospital, Oxford, he laid it on the table, nothing was held back, he said it would take me 15 months, and he was right, by telling me this I did not expect too much of myself. I could not walk my little dog until 5 months afterwards, because did not have the strength if she pulled on the lead, But little by little I did things! but suffered with bouts of feeling sick! and still do, however most of that is my own fault. I was told this about 8 weeks before my op along with telling me about the horrendous scar I would have! but! I knew I had no choice if I valued my life, I was so ill at that time. It's best to be prepared.

[spanner16]

I agree, I was told how big the operation was but I truly didn't understand just how much my life would change afterwards. People around me don't really understand when I say that my life has changed completely. I think they think it's because I've had cancer and my mindset has changed which is true but after the operation I cannot do anything in the same way that I could before - literally my whole life has changed.

On a brighter note, for those who are just about to go through the op / have just had it life DOES get better. I'm less than a year out of my op and I'm back at work full time and at the gym running and weight training five times a week (although I'll admit that might be because I'm 27) and I only finished my post op chemo in June so things do get better. I remember in the early days thinking 'if this is living I don't want to do it' I had terrible trouble with both early and late dumping and the chemo made me so nauseous I could barely eat at all, there were days I was surviving on two slices of dry toast and nothing more but every week it gets better and now I'm eating regularly, my weight is stabilising and I'm even happy going out to eat with friends / family for dinner. Please believe me when I say there is light at the end of the tunnel!!

[strangetimes]

I wouldn't want to scare anyone about to have the op . I didn't find the op or hospital experience too bad at all - and I did have a few minor setbacks .

The care and nursing were absolutely fantastic - St Thomas's .

I suppose it's the after effects and gradual coming to terms with it all . I haven't found it dramatic or horrendous ,just wearisome I suppose . It varies a lot which makes it difficult for both patient and HCP .

The response from friends and family is tricky - one doesn't want to upset them and I suspect I'm too stoical .And anyway their interest and sympathy fades . I'd be the same I'm sure ,there's a limit to feeling sympathetic and interested .

People don't understand ,how can they ? But I'm tired now of hearing how I'll be fine once I finish the chemo ,I know I'll be better . But I don't think I'll ever be fine .

[Hidden in reply to strangetimes]

I think what you say is quite true. After a while one simply says to friends 'Fine!' when they ask after your health because it is too complicated to do anything else. I think that it is one thing to get rid of the cancer (which is the main priority) but achieving a good digestion system, and regaining stamina are different matters entirely.

[hilr]

Hi, my surgeon and fabulous nurse specialist explained in great detail what the surgery would entail and what the recovery path would be and that it would take a year to be anywhere near normal or back to work. I took that as a challenge and determined to recover and get back to normal.

Being a masochist and really interested in all things medical I actually watched to surgery on u-tube and found it fascinating and informative, but of course not for everyone.

I do find the support here and on the Macmillan site brilliant, and wish more could be done to put patients old and new in touch with each other. There are so many nuances to the treatment and the way we react that it's reassuring when you find out others are suffering the same things as you and that it's "normal".

Now that I am six months post-op and six weeks post chemo I am suddenly feeling so much better - I hope that gives you some hope violet queen.

Hilary xxx