Thanks Douglas, any true positive stories are a real help at the moment. We'll keep fighting as we have from day 1.

Lee

Hey Andi, hope you're doing OK.

You will get there and be out socialising again ... I've had a total gastrectomy and was out for a family meal in a restaurant in Brighton for my sons 18th birthday at the end of December - and split a prawn cocktail with my Wife for a starter, and ate half a main that was a big plate of chicken arrabiatta pasta (got the other half doggy boxed and took home for later) with a bottle of cola on the side.

Keep going, stay positive, you're doing great by the sound of it.

Hi Redski

Thank you for the encouragement - can eat so little at the moment!!  Still have a very annoying cough!!  I think the dull grey days don't help.   Have just been told that my prolonged hospital stay makes it too late to have post op chemo - so treatment over. 
 

Really happy to hear you are doing so well

Andi xx

Don't stress or worry too much about it, I'm still getting used to the new eating regime too ... and the amount you can eat gets better with time. 
I still struggle with some stuff too ! ... my eyes are obviously bigger than my non existent stomach - so I have to remember to eat slow, chew loads and not eat more than half a usual portion and come back to the rest 20-30 mins later.

Some stuff goes down really well like creamy pastas ... think carbonaras etc work well with me and creamy curry's like Tikka Masala by Charlie Bingham on the supermarket shelves.

Other stuff can randomly cause me discomfort / getting sick with the food not sitting right or perhaps I've eaten it too quickly !

Well done for finishing treatment and getting out of hospital in time for Xmas - was so happy for you to hear that in your update.

Keep going, stay positive !

My husband was diagnosed same staging as you in July.

how are you doing?

T

Hi I've been following these threads with interest as I was diagnosed with OC in June 21 

I went through the initial four rounds of FLOT then had my surgery on the 9th November and I'm now 8 weeks post surgery 

I went home after two weeks but was readmitted a week later as my wound on my back became infected and once that happens they begin to suspect a leak, however thankfully that was not the case but meant I was on fluids longer than I would have liked, I managed to get home just before Xmas and I'm recovering well.

Diet wise I'm on soft and trying to gauge the size of my stomach which is trial and error, my appetite is good and I've began to put on some weight as I'd lost around two stones after the operation.

exrecise wise I'm managing to get out and walk around 2 miles a day, intention is to increase this to 4 with the help of my beloved hound.

ive a follow up appointment with the surgeon coming up very soon, I met him in hospital and he said "we got it all, it's all gone, excellent margin and we removed two LN" he did not mention any follow up chemo so was wondering, do they offer this to everyone or is it case by case? 
 

best wishes to all on this group and their individual journeys, just by reading it has helped me on my journey

regards

Tipo 

Hi Tipo,

Firstly as we all say welcome to the group. It's not one you would choose to belong to but I'm glad reading our posts has helped you through an extremely difficult time in your life.

In answer to your question 

My understanding is the usual procedure is FLOT/OP/FLOT.  The second FLOT is usually given within 12 weeks of the op. If you've read my posts you will know my husband's journey took some unusual twists and turns but he was still offered FLOT at 12 weeks post the Oesophagectomy and 5 weeks post VATs decortication on his left lung.

Some choose not to have it and Andi recently posted she wasn't able to have it due to her complications following surgery.

You sound like you are recovering well and are making the most of being able to get out and walk. My husband is now upto 5 miles walking. He had his fIrst op (Oesophagectomy) on 4th May. Third op on 1st July. He was unsure whether to have post op FLOT due to everything he'd been through but was offered it and advised it was worth doing so he had it. His pathology results were T2 NO MO and surgeon said they got it all with good margins. 37 LN removed all negative. The actual op was text book. 
As we all say it's up to the individual and the Oncologist is the best person to advise. My husband said it was harder the second time but he completed it. We are off up the peaks next week which is amazing after what  he's been through! Everyone on here has their own story but this thread has been a lifeline for me as the onlooker.

Best wishes and if you feel able to please post an update. We all care about everyone on this journey even though we've never met.

Keeping the faith

Milly

Hi y'all, 

I am really only trying to come once a week now!!!! Not because I don't'love y'all' anymore, but 2-3 times a day !!! Need to find a 'hobby'(:

Lee- what can I say absolutely keep fighting, but also LIVING, get out there and live it up. I know I tend to be a bit 'over positive' LOL. Do remember that palliative does NOT mean check out time- it means treating a chronic condition when symptoms play up. There are a few around on here that have been palliative with OC , one for at least 8 years and another who was deemed palliative, become disease free after a load of chemo and immunotherapy- so get living xxx

As for me 'dreading' New Year's Eve-  , not really anymore- I kinda expect those expected events on that date!!! LOL. At least I can 'plan' - what else can you do eh!

Welcome  also to two newbies- Tracy and Tipo. The ever expanding oesophageal cancer club x None of us medics on here , just experts in the lived experience of 'living the dream' ask away. Tracy- my husband was diagnosed originally with the same as yours. Ask away- nothing 'off'limits (:

Tipo- you are also pretty much the same as us. My husband 'bless him' , a year post op still doesn't quite get the concept of 'little and often' .Looks like you may only have the post op chemo to do then?
 

Keep keeping that faith my fellow rollercoaster riders

Hilts

Hi Tipo

i couldn't agree more - this site has been SOOOOO helpful - everyone so positive. I'm sure your oncologist will soon be in touch re post op FLOT. I was in hospital for 10 weeks and it's now too late for the chemo. I would have had it if offered as of the 30 LN removed - 5 were affected. But I'm sure they got them all. I can just about walk a kilometre - trying hard to improve but my lungs are not good - need to be able to walk to the relevant 'gate' at the airport when I finally book a holiday!!!!! 
 

Keep the tips and ideas coming - and keep walking

Andi xxx