Hi Distraught,

I don't know if you have seen my previous post in which I replied to you as it was part of my whole post! Everyone says the same the waiting is just so hard and as an onlooker and 'head of research' I really struggled more so than my husband who just dealt with the facts. It shows how even though the same procedures are used they aren't necessarily in the same time frame/order. We had a wait from 27th October until 30th December before we knew what path Kev  was taking and the PET scan was after the CT scan but before the Ultrasound Endoscopy and Fitness Test. As BFG said laporoscopy is the last test. My husband had the laporoscopy mid December but due to a delay Covid, Christmas and a problem with DPD blood tests didn't start chemo till end of January. It was horrible.  As everyone says when you know the plan it does help. We are all here for any questions,  we aren't medics but we do 'get it' from being in a similar situation.

keeping the faith 

Milly

Hi All,

Dad has made it through the other side Now for the recovery, from what I know sometimes is the hardest part but what a relief knowing that the op has happened now!

Lee I keep thinking about your dad, I'll keep him in my thoughts! 
 

Hi all

Lost touch a bit - still in hospital -operation was 29 September. Finally had tracheotomy out last week and now on a ward.  Started food (clear fluids) yesterday and am getting a bit stronger. Not sure I'd have done this if I'd known. Now I just want to be home for Christmas - not sure if I'll have second round of chemo. 
 

Sorry to sound negative but it's been a very tough 9 weeks

Andi x

Yay Andi - was wondering what you were up to.

Thousands of bravery emojis for you xx

yep, the op post op period certainly can have its'moments' a Trachy eh- well that is out out out and you are on food yaaaay- you're through it, they'll chuck you out soon, don't worry about that x

You probably 'regret' having the op at the mo, BUT, you are probably fed up to the back teeth and a bit blue having been looked up for 9 weeks. , but do remember the 'beast' has been murdered, stopped in its tracks. I often used to say to my husband what choice did any of us have! Hopefully, take some heart that there are quite a few of us out, done and dusted looking back - was it worth it? - hell yes, I have my husband alive and 'disease free' (for now- I always say that, just not tempting fate).

So Andi, enjoy your 'minced and moist'food and look forward to your turkey and trifle for xmas

keepkeeping the faith

hilts x

Ah Hils - thank you for that. Been put on puréed diet this morning - so progressing and closer to home for Christmas.  It is as you say, 9 weeks in hospital - I've never been so low but must pick myself up - I will win xxx

Hi everyone...well where do I start!

Just a recap for anyone new - my Dad was diagnosed with stage 4 inoperable oc back in September 2020 - large tumour in the esophagus and spread to both local and distant lymph node. He has had chemotherapy for the last year and in February managed to get covid and pneumonia! After a few positive ct scans he was sent for a pet scan and this shown a reduction in the mass of the tumour and the distant lymph nodes be cancer free. The oncologist then said there was a slight possibility of surgery - something he had ruled out at the start, when he had said the treatment was only for palliative care and life expectancy was 12 maybe upto 24 months depending. 

After meetings with the surgeon, the surgeon said he could do the esophagectomy but it would be a major operation and they are not sure whether they would find more cancer once they opened up my Dad. They said once they started the surgery,  they would do a biopsy and get the results within 30 mins - if cancer had spread to the stomach or any distant lymph nodes again,  then would stop the operation and see him back up!

So ... on the day of the operation (Thursday 18th Nov) I followed the advice from people on here and took the day off work and went out with my Mum (one of the only days here in Spain that pi***** it down all day), so we resulted into going to shopping centre and having coffee at every possible stop, looking at the time every 20 mins! We new that the operation was starting at 7.00 am and the surgeon was expecting biopsy results back by 10/11 so we guessed to receive a call around 11.30 if the news was bad and the operation couldn't proceed.  Anxiously, we went past the 12.00 then the 1pm mark and still no call! We then was expecting a call around the estimated finish time which was around 5pm. We finally got a call at 10.30pm saying the operation went well but was very difficult with complications early on( what a good bit of news but probably the longest day of our lives and I've never looked at my watch as much!).

My Dad was then in intensive care for 7 days and finally brought to the ward Thursday just gone. 

The surgeon said they had to cut two thirds of the esophagus and attach the stomach (which was preferable to using the colon). Also they cut out the lymph nodes surrounding. 

We have only been able to visit the last 2 days since being on the ward - yesterday my Dad had a cold apple tea and a little milkshake.  The surgeon said he will not need a feeding tube - he will be on liquids for the next weak and then on a pureed diet for the next few weeks. 

The surgsaid he is doing really well and maybe able to go home in 7/10 days depending...

Today my Dad has been to the toilet for the first time and took his first walk up and down the corridor! Amazing what we see as an accomplishment now!

The surgeon said that Dad will have another scan in about 2 weeks and that will show together with the biopsy if there's any micro cancerous cells - the surgeon also said before the operation,  the cancer would most likely return but the operation would be the best option to give more time, with a slim chance of being cured. As you'll all know, we now take the best options available (especially when there weren't any options available at the start of our journey)

So that's about it folks- sorry for the very long update .

Andi- very good to hear you are winning- keep going.

Scott - really good news about your Dad- sounds like we have similar stories!

Milly/Hilts/BFG/Redski/Doug and everyone else...thank you as always for your kind words of encouragement...they mean so much emotionally and factually,  thank you 

My Dad 

Lee YYYAAAAAAYY.

All done too - thousands of clapping emojis. You got through it too. And your Dad, done and dusted tooo - sounds like the op most have had- yaaaaayyyy. Nothing else to say really apart from YAAAAAAYYYY. (: genuinely happy and pleased for y'all. Sitting here smiling (:.

Keep Keeping the faith folks

HILTS.

Thanks Hilts :happy:

Hi all,

We now have the PET scan result and are due to see the surgeon allocated to his case next week.  The result shows what the CT scan also showed, localised and limited to 1-2 lymph nodes.

If, which looks likely, he will be put forward for the FLOT and surgery route, how does this work and how long before chemo begins?  What can we expect by way of side effects? etc. etc.  Any advice and help to prepare would be useful.

He's still managing to keep down thin soups, custard, gallons of ice cream and yoghurt piled  high with clotted cream.  He's also having the protein shakes prescribed by the doctors