Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Afternoon y'all,

Update from the front line.

Husband is done and dusted. He had what is known in the trade as a 'parahaitus hernia repair' on tuesday, laparoscopic/keyhole.

Surgeon was very 'chatty' post op, saying large amounts of his colon had migrated into the chest cavity and was pressing on the lung - hence cough - green face emoji- he was surprised his bowel hadn't obstructed!!!
Picked him up yesterday in good nick. The best part of all is that his cough has GONE!!! First time since original op that he ( and me!) has spend the night without it yaaaayyy. Although still taking piriton for the post nasal drip which also sets it off.

They narrowed the hiatus ( which was enlarged to rebuild plumbing originally) and tacked it all in place , so shouldn't move again , fingers x emoji's.

This 'complication' is rare - apparently, very rare in open, BUT, about 20% of keyholes have problems, so it is increasingly being seen.

They also found no evidence of anything 'dodgy' present

So happy day for us yay

Keeping the faith

Hilts x

Hi Hilts...great news! So proper sleep again...both from no coughing and mentally knowing all is good. 

Great news

Lee

Hi Hilts,

Thats great news Hilts! A good nights sleep now! Also brilliant that nothing dodgy was found - so a free MOT included lol.

Really pleased for you both. Don't know if you saw on a post but we've booked Tenerife for two weeks in January all being well - can't jinx anything lol.

Lee any news on a date?

keeping the faith

Milly

Thanx both, 

yep, the difference with the cough happened immediately- incredible. So maybe ,finally,  we can move on. Don't get me wrong, we are vvvv pleased that no dodgy bits, but the cough was driving him (and me) MAD. Fair play to the unit though, they just got on and sorted it.

At the moment we are watching 'For a few dollar more' - I love it especially the score/music. He is pain free and moaning about how itchy his bullet wounds are ......, not wounded by Clint or Van Cleef (:

He was on free fluids straight after op yesterday and got to eat by evening, light diet one might think- er , nope not him chicken korma followed by jam sponge and custard!!! No beer though as hospitals are, as yet unlicensed (:

Millie- you absolutely Enjoy Tenerife- warming the bones and not cooking (:! Is gooood for the soul.As is 'curative' beer (: 

Lee- let us know any updates

Keeping the faith

Hilts

Hi Hilts /Milly, back end of next week...feeling positive but very uncomfortable...just planning everything as best we can so we'll all be ready.

Lee

Hi Lee,

I think how you are feeling is perfectly normal. I felt a mixture of relief that the big day had been agreed but also trepidation.  Remember they are highly skilled professionals whose vocation is to help patients. This op is big so they don't do it unless they think that

a) the patient can tolerate it and

b) they feel it's worth putting the patient through the operation.

Hang on in there and if your dad is aware that you are part of this group please send him best wishes that he has a lot of fellow patients and their relatives routing for him.

keeping the faith for everyone 

Milly

Hello,

Dad has been given new date of next week too, I completely understand how you are feeling Lee. A little helpless but also remaining positive that this is a massive win in the next stage of beating the OC!

I hope all goes well with your dad and I look forward to hearing about his progress!

Hilts - great news on your hubby! Yourself and other have inspired me with your stories over the past 6 months! I talk about your stories to my dad like I know you personally!!

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 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