Advice

I,m having my oesphagetomy at the beginning of April. After seeing the surgeon on Friday and having it all explained my feelings of stress and anxiety are at an all time high I go from feeling fine to feeling awful in the space of an hour or so it's like being on a roller coaster I,m sure it's normal and lots of people on here have felt the same but how do I cope with these feelings I try to keep busy and not dwell on things but thoughts creep in when I least expect them to. I,m asking for any advice before and after the op to help me through this time and will be grateful for any advice on how to get through this . Thanks .

[Magpuss]

I don't know if this will help you to stop worrying but - I decided that as I didn't have to do the op', I had nothing to worry about - all I had to do was go to sleep. It's all new 'to you' but not to those involved in getting the job done. I just said a few prayers for those who were going to be doing the op' then I looked forward to a nice long nap. I didn't worry about what would happen afterwards, I'd been told to expect quite a long recovery period - (I was 72 at the time) so I wasn't expecting an overnight miracle cure but in fact I felt much better than I expected to when I came round. I must have looked better than expected too, because my son and daughter were amazed to see me conscious, smiling and ready to chat later that same day. Not what they expected at all. I had a period of sickness after I began to eat again but if I'd discovered this site earlier- I'd have known that that can happen, as if was - I thought maybe something had gone wrong and that was rather worrying. It hadn't, it was just my body getting used to its new 'plumbing', I was fine and still am - that was March 2012, it's my anniversary on the 27th! Try not worry - imagine, a nice long nap with nothing to get up too early for the next day. Wishing you well, good luck.xx

[Hidden in reply to Magpuss]

Thanks for getting back to me and it's good to hear you felt ok after the op i.ll certainly keep in mind what you say it makes me feel better knowing you were ok after the op thanks again

[zerodrudge in reply to Hidden]

Praying for you!Had mine done in 2010 doing great today.

[Hon-Moonraker]

I had mine in May last year. I went to sleep one day and woke up in ICU the next day. Within hours they had me walking around the ward. I spent just over a week in hospital in Oxford. Then two months after getting home I was back at work. I'm not saying everybody's experience will be the same, but ultimately what choice do we have? All you can do is put your faith in the experience of the surgical team. Post-Op, you will have to contend with some discomfort, pureed food, tiredness, maybe dumping syndrome for a few weeks. All I can say is that in my case I was determined to go back to being the person I was and for the most part I have done so.

[Hidden in reply to Hon-Moonraker]

So glad to hear you've done so well after your op i,m so emotional at the moment and full of what ifs but after reading your reply I tell myself I,m going to get over this and be fine but then other thoughts creep in. its so good to hear from people that are doing ok and great that you were able to go back to work so soon after how did you cope in the days before the op ? I think it's the waiting that's getting to me but I know there's nothing I can do about it I go out walking a lot and keep as busy as I can but its still difficult. Thanks for your reply it's made me feel a lot better about things x

[Hon-Moonraker in reply to Hidden]

Molly,

I was initially diagnosed in Jan 2018 having gone to the GP due to swallowing problems. I was booked in very quickly for an endoscopy (which I hate) it took them too long to release me so we knew something was wrong. Initially they said they'd seen something they didn't like the look of. I was called back a week later and it was confirmed. Which is a story in Itself, but won't dwell on that. I read the booklet from McMillans which makes daunting reading and makes no promises. Reading it upset me, but worse was the Internet (Stay off it!). I was also upset when I visited the oncology dept. I had my first session and felt nauseous at times, but nothing too bad until I finished the course. The last day of session one I got extremely ill due to the rare lack of a certain ensime that they apparently see once in every three years. It was somewhat dodgy and I ended up in hospital for a whole month with shed load of tubes going in and out of me. I came out of hospital at the beginning of May and on May 22nd I went back in for the op. I did and sometimes still get a bit maudlin in the quiet moments, but I have had the tumor, a load of surrounding tissue and 43 lymph glands removed. They tell me I'm clear so I can only take the positive from that. As my wife says, none of us knows our long term future.

[Paulbrighton]

Hi. I was worried too. But actually when I came round afterwards there was no pain and I was able to chat in the evening. The next day despite loads of tubes coming out of everywhere I was able to get up and have my first walk around the ward. Something i then did every day. There wasn’t much pain afterwards due to the very good pain control. The first day when I started sipping water I was surprised I could sip and swallow. It felt so good. Then over the next 10 days i gradually increased the food until I was sent home on a soft diet with no feeding tube. It took about two to three months before I could eat quite well. Now one year later I am putting on weight and eating much more normally. It continues to improve and although we don’t yet go out for as many meals we do sometimes and I have been on holiday twice. Once in the USA for five weeks and once to Spain for two weeks. Eating out the whole of the holiday. .

So the op is a big one and it takes some time to get over but it all passes and life resumes. You are one of the lucky 30% who can have the op and there’s loads of great advice here on eating and getting back to a normal life.

We all worry at different times and in different ways. Some lucky people don’t worry at all. I do though and when I am worried I try to distract myself with things i like. I also have some sleeping pills in case I am worried at night and can’t sleep.

Good luck for your op and soon you will be on the path of getting over it.

Love Paul

[jeffw663]

Your journey is just like all ours were, up hills, down hills and roller coasters up and down, stick with it, and think of the future,1 year ago I could only swallow liquids, now I had a cooked breakfast and we are having steak tonight.

There will be times when you just have to say to yourself 'come on, I have a future, I need to do this'

I can't think that anyone approached the op without feeling stress and anxiety but the surgeons are fantastic, they know what they are doing and I'm sure you will be in safe hands. I had no pain whatsoever, I went to sleep on the op table and woke up in ICU, 2 days there and then 8 days on the wards.

How lucky are we that we have the opportunity to have the I.L. ?

Go get it and good luck, as my daughter said to me, keep a stiff upper lip and I replied yes, over a wobbly lower one

[Bob111]

Hi Molly, I had minimal invasive Ivor Lewis on 27th February and I must admit the last few months have been an emotional rollercoaster! 9 weeks of chemo from mid November until third week of January. It wasn't until I'd been off it a couple of weeks prior to surgery how bad it made me feel! Surgery went well, about 9 hours and first night on high dependency ward was good. Up and walking round ward the following day. 2 days on small amounts of water 3rd day cuppa 4th soup, jelly and ice cream. Home after 5 nights with chest drain still in as have leak in thoracic duct, been on low fat diet to give this time to seal and hopeful will be removed tomorrow. Recovery is a tad slow for my liking but I try and push myself a little bit more every day and still early. Still on soft diet and small portions but already increased slightly but just being careful not to overeat. Sleeping well after getting home with just pillows but may look into wedge. To be honest surgery worried me a lot but stay strong and I'm sure all will go well as it did for me.

Best wishes

[liz_crisp]

Hi Molly, I had the op 9 years ago and was absolutely terrified. I got my CNS to introduce me to someone who had had the op a few months before. I wanted to know that she would be able to eat and do normal things. We went to Marks and Spencer’s cafe and both had coffe and cake and she spent ages with me laughing, eating and talking. She came to visit in hospital too. She suggested I filled my freezers and cupboards with food partly because I lived with my 13 year old son and I would need small portions youghurt pots or baby food freezer trays size. And it kept me occupied. I made up lots of small portions and put them in the freezer. Fruit compote I could mix with readymade custard, youghurt or cream. Mashed potato I could add mustard, cream butter and grated cheese too put with scrambled egg, mushrooms chopped in butter. Smoked salmon etc. I grated lots of cheese and froze it as it freezes well on a tray then pop in a bag. It can be sprinkled over allsorts in the microwave ie sweet potatoes baked, baked potatoes, peas, brocolli, cabbage, scrambled egg, put in an omelette, added to mashed parsnips etc I bought some ready made jellies and those tuna lunches in a can. Ritz biscuits as the melt on the tongue or you can crunch them and eat the with dips just two or three at a time got some papaya juice and pineapple juice in as I was told by the surgeon it helps with digestion. You can make ice lollies with it too so you have small portions of it and it keeps. and Linda my buddy said i wouldn’t want to do much after the op but I should have lots of small nibbles easy to eat. I made some smoothies and froze them in ice cubes so I could put them in a glass and let them melt. Ice creams went into the freezer I found individual ice creams, choci ices, etc were better as I didn’t have the strength or inclination to open tubs and dig it out. If you have a partner you will not have that problem. Her advice was great might not have been the healthiest of diets but it was very easy. I also had lots of soft cheese, berries chocolate and biscuits etc anything that would keep I shopped I and had stocked. My tastes did change and vary wildly so stockup a variety it kept me busy and it did help as I had no appitite really but I could put a selection in the fridge to defrost and then it took a few minutes in the microwave and it was ready to eat. Or I just had to unwrap an ice cream.

On the morning of the op i was in a daze I suppose it all seemed a bit surreal. I went To pre op and got changed. Had a tussle with the long white stonkings they want you to wear but we finally got them on with a lot of laughing. Then I went to see the anethitist and then to theatres after a hug from my surgeon I don’t remember anything till waking briefly in intensive care which I thought was a disco and was slightly bewildered that my cousin whose high heels I could see had taken me out to celebrate. ( the wonders of morphine)

The next time I woke I was in HDU and a lovely little Indian lady sorted out my pain in minutes and told me all was well, family passed in and out and the lovely physio was right I did swear at him when he suggested a short walk with an entourage to get me moving and the breathing exercise was not as easy as I thought it was but even he made me smile, laughing was a tad uncomfortable. I was eating small amounts and had a feeding tube when I left hospital 14 days later as I had eaten too much too soon, a lasagne and apricots for pudding. (Complete Crazy but it was put in front of me ).

It is a big op and a change in life with a slow recovery ( it’s quicker now with keyhole I believe). But still a long time for the gut to get itself sorted and relearn how to work. Big hugs and good luck

Lizzy

[slobjohnb]

I had mine at the end of January 2018 aged 70. All went well, two whole body scans have since shown all clear. There have been issues with eating and sleeping but you soon get used to it and adapt accordingly. Most of the time in Hospital there is so much going on that you don't get time to dwell on it. Most important - keep fit and don't try to fight your stomach - take it easy on yourself. The surgeons are amazing.

[kiddy]

Hi there try keep busy go for walks ,meet up with friends and go on a break if you can. If you are able to exercise do so and enjoy food that you can eat to build yourself up.

I downloaded an app free for 10 sessions Headspace it helps you to relax. The hospital may have groups running for relaxation classes check with them.

Yes if is a big op and you will wake with lots of tubes attached,I cant really remember the first 5 days in HDU but I was out of bed in a chair the next morning, physio came to give me breathing exercises for the lung they collapse. I did everything I was told. I walked round the ward and corridors with everything attached to a push along trolley. Gradually tubes were taken away.I was on a ward with non cancer patients so the conversation was varied.

Buy yourself some nice hand cream, lip balm, face wipes and a mirror to have at your bedside. I needed a nice soft blanket to wrap around me as I couldn’t get a dressing gown on and it can get chilly. I also had colouring in and crossword material.

Good Luck

Debbie

[Hidden]

Good Luck Molly! I felt just as you did three years ago! It’s better when it’s done! You’ve had lots of tips for recovery today and so al I can say is that as the weeks went by after the op life went back to normal. First a sort of functional normal and then continuous incremental improvement and that after a major post surgical blip. Today I’m on my way to my three year check and I don’t know what I’m going to say to the nurse who does it. I’m too recovered! While eating and putting on weight was an issue for a long time I’m now having to watch the calories again. I can pretty well do the same as other people! So take heart it’s one day at a time but as you look back you should see more and more improvement and feel more like the usual Molly! x

[Tinypuss]

It's 12 years today since I had my op. Had a few set backs along the way but I'm still here. Think positive. I've had some wonderful holidays, have a lovely family who support me and a loving husband. Best of all I had one grandchild 12years ago and now I have 5. It's life changing you will have good days and bad, hopefully as time goes on more good ones. Hope all goes well.

[Janashlin]

I went through this operation in December and to be honest I had lots of complications and spent two months in intensive care. Still I am here and doing pretty good right now. My biggest piece of advice is meditation. I never did it until I had my diagnosis and it has helped me keep my sanity. Good luck with everything. We do what we have to do to stay in the life rollercoaster.

[grandylynda]

Yes, it is a scary time. You don't say if you have already had chemradiotherapy. I had that first and as I recovered from that I concentrated on doing all the things I enjoy and getting the house straight. I also did a lot of praying. Someone here suggests doing coking and freezing small portions. That's a really good idea with a purpose. I didn't think of that one because I refused to ever think furthere than the next step [possibly a mistake with hindsight] My surgeon and aneasthatist told me on the day, when I was terrified, that they hadn't lost anyone yet and didn't intend to start with me. The surgeon also showed me a carton on his phone entitled "never give up" A pelican has a frog in its mouth but the frogs legs are free and the front ones are round the pelicans neck! If I was feeling low in the coming weeks and months my husband would say "remember you are the frog not the pelican" I was 69 when I had my op and my recovery seemed long compared with some people on this site. 18months down the line life is good again. I do get very tired and the plumbing can still play up but you learn to listen to your body and cope with it.

Hope all goes well. Stay positive. Oh and I also found "Head space" useful. you can download a trial set of sessions for free. Its meditation .

[tallbear]

Hi Molly.

Lots of good advice on here as always.

Don't think your unusual being worried and perhaps frightened by the prospect.

I did loads of exercise and concentrated on trying to put on weight, that is what the surgeon advised and I was as fit as a butchers dog before the op and I had managed to put on a stone in weight. I was eating peanut butter on toast with a strawberry jam topping! Yum yum, I wish I could eat it now.

I am more than three years post op and in truth when I got to the hospital on the morning of the operation I was petrified and seriously nervous, but who wouldn't be?

When I was awoken by the team, I was in ICU with tubes and things everywhere, but I wasn't in pain.

I think different hospitals have different ideas on food and I was not allowed to eat or drink at all for my entire stay. All my food was via overnight tube feeds, and these continued at home.

Try not to worry, and try to keep yourself busy and most of all good luck.

Hugs Richard