Update. My Journey.

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Hi all. After getting my initial diagnosis om October 7th.  I am now sat here in my hospital bed 4-5 days post op so thought i would update everyone on where i'm at and see if there is any useful tips for the, no-doubt difficult, weeks and months to come.

Afterr successfully completing FLOT chemo (covered on another post) inwas in for the op this Monday, 23rd Feb. According to the surgeon, who i managed to speak with in detail yesterday' the operation went well and she removed everything that she wanted too. Crazy to be told there.was no actual tumor there as such. More.just a thickening of the wall lining of the oesophagus which would have eventually grown into something more sinister given time.

Much to myb frustration and disappointment, i ended up having open surgery as oppose to minimimally invasive or robototic surgery so look and feel like ive been run over by a combine harvester.and have the scars to prove it. First few.days in ICU were pretty tough but pain relief was plentiful and the staff excellent so i've now cleared this part of the recovery process.

As of tea time last i was moved from intensive care and had drains removed from both my stomach and left lung, leaving just the main right hand chest drain to come out.

After the drains were removed I was also told I could try my first solid since since Sunday dinner (to test the system) which was another major milestone having been pretty much nil by mouth for 5 days, small sips of water aside.

Dinner consisted a small cup of broth (not completely smooth), followed  a smooth strawberry yoghurt. Ate the broth slowly and experience no notable issues. Small amount of heartburn and burping, all of which seemed perfectly normal in my view.

importantly, everything seemed to be going well so around an hour later I decided to try the yoghurt. This was not nearly as successful and u  experienced something that.i assume to be dumping syndrome. Basically about 20 mins after.eating thenl yoghurt i started to feel real funny. Almost as though I was sinking into my chair and about to faint. Skin went cold and clammy, heart racing etc etc. Essentially not very pleasant, despite only lasting half and hour.

Interested to hear how people have navigated this period and what foods have worked and.vice..versa. determined to.gdg though this as painlessly as possibly so need to.be taking advice from people who have physically walked the walk.

Apologies.for thw bad spelling, grammar and punctuation. Taken me about an hour to.write this and ive been back and forwards attempting to correct.stugf whilst also periodically clicking my morphine pump which completely counterproductive.

  • Hi Russell. Such a great post to read and well done on getting through the operation. I assume you’re going for daily walks up and down the ward (obviously with drains and drips in tact!).

    I experienced my first ‘dumping’ episode not long after getting home from the hospital, and after I’d been out for a gentle walk. I’d called into the local coffee shop and had a few sips of a latte followed by a small piece of mashed up banana cake. Oh my god - I honestly thought I wasn’t going to make it home. My stomach was doing somersaults and when I eventually got to the loo I felt exactly as you did, clammy, cold, stomach cramps and near to fainting. I staggered out of the loo and fell to sleep on the settee for a good hour. I’m glad to say that was the worse attack I ever had. I have had a few episodes since but nothing like that one. I am now 2 and a half years on from the op, and I have the occasional rush to the loo, but it’s mainly because I’ve eaten food and had a hot drink together. I find separating the two things (or just having a small amount of each) works. If I go out for a meal I usually have a glass of wine first, and then eat. It seems to work for me. 

    Keep on clicking the morphine and get lots of rest. Sounds like you’re doing brilliantly. Best wishes, Julie

  • Hi Russell,

    Amongst your various tubes, have you been fitted with a JEJ feeding tube? If so, this will be crucial for your first few weeks in getting sufficient calories into your body. I kept mine for about 6 weeks with the amount gradually reduced as I became more able to fulfill my calorific needs orally. As you will not be able to eat very much, it is important to maximise the calorie count of what you do eat. I consumed a lot of milkshakes (bananas, ice cream, full fat milk), custard and full fat yoghurts. Meals consisted of things like cheesy soft scrambled eggs, cheesy mashed potato with plenty of butter and cream, porridge made with full fat milk and  sugar and double cream. I seemed to be adding double cream to practically everything!! Two years surgery anniversary is today and I am able to eat anything I like (albeit in small portions). Good luck with your recovery but please remember that it will be a slow one (figure on a year at least) and patience is required. 

    Cool Blue

  • Thanks Julie. Just had a good laugh reading back through my original post and seeing all the mistakes. That was near perfect in my minds eye last night. Haha. Not nearly as hammered now. Had a banana for breakfast and a banana and plate of beans for lunch, both of which caused a fair amount of sweating but nothing too much worse. Always pleased to hear from people, post op, who are doing well. I plan to be one of those. Lol. Doing plenty of moving about so pleased from a mobility perspective. Russ