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,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

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

Hi Scott,

Yippee Scott your dad has come through the op which Ida huge relief. As I always say no two people are the same so just go with it and hopefully your dad will make steady promises. Please send our best wishes.

Lee I hope your dad is OK, thinking of you all.

keep the faith

Milly

Hi Andi!

Sooo relieved to hear from you.!I've been looking A LOT to see if you'd posted.

It sounds like you've had an extremely difficult time BUT onwards you go! As you may recall my husband's recovery took some unexpected twists and turns 5 weeks in hospital, 3 week home, another operation in a different hospital then home after 5 days. All in all 3 major operations in 8 weeks BUT he is recovering well fingers crossed! He felt like you about post chemo but in the end he was able to have it. Only you and the team can decide this. I would suggest that the old adage of 'one step at a time' is the best option. Try not to look too far back/forward and take the positives from small gains. Having a tracheotomy is something my husband almost had to have done but in the end he didn't. It's served a purpose of saving your life and is now out! No one can fully appreciate the trauma both physically and mentally you patients go through without added complications so give yourself and the brilliant NHS staff a huge pat on the back for getting so far! I hope you get support to deal with the emotional rollercoaster you've been on. 

Keep the faith Andi. I hope it helps to know we all care even though we've not met. Also I hope knowing others have had big hurdles to go over helps too. We are currently in Torquay  on our first ever Turkey and Tinsel weekend with ex RR employees- it's Christmas Day already here! Laughing emoji. Everything crossed that you will be home for Christmas and I hope you've been allowed a few visits  during all this time.

keeping the faith for everyone 

Milly x
 

Hi Milly

Thank you so much for your very kind words. I am getting stronger every day - and now on puréed food, and as operation was over 8 weeks ago, eating is not a problem.  I am working really hard with the physio's today get stronger but just can't get off the last bit of oxygen!!  But I'll do it!!!  
 

So good to hear that you have got away for 'Christmas' - and that your hubby is doing well.  My first great granddaughter was born on 4th October- so my aim is to meet her. 
 

This group have given me so much encouragement and the NHS are amazing. They have allowed one of my daughters to visit me - I was so very down - even though there are no visitors allowed. I'm very lucky!!  
 

Have a fabulous first Christmas and an even better second!! I will be home for Christmas 

Andi xx

Hi Lee oh my goodness what great news! I have been looking for updates from Andi for weeks and you and Scott since you said when the ops were happening. Good news day!

I'm soo pleased that your dad has come through and is making progress. We had the same 'pep' talk of a possible open and close. Awful as you've come so far it's within touching distance and then you're hit with that! 
Anyway focus on the now! Walking, eating, even going to the loo are huge steps forward. The things we all take for granted - even breathing are an achievement. So so happy! We will have a Christmas Day drink for everyone tonight (on a Turkey and Tinsel  weekend in Torquay) ha ha especially Andi, your dad Lee and Scotts dad as they all continue their individual recoveries. 

keeping the faith as always for everyone 

Milly

Hi distraught,

I hope seeing the recent positive posts has helped you. As I think I said on my previous posts there are slight differences between timings/order of tests. My husband had a longer than average wait until start of treatment - around 14 weeks in total so a long time. Most people seem to range between 5 - 8 weeks. 

Regarding side effects it just depends on the individual but most people seem to get some at varying degrees. The doctor/nurses will give you a leaflet which outline the effects but try not to be scared as it doesn't mean your husband will get all these. Most people find it gets harder as the cycles go on but not everyone. It's a case of  taking it astep at a time. They give you a rapid response card which sounds alarming but don't be as it's more about ringing with symptoms and getting advice so they can help you. A digital thermometer is a necessity. My husband also drank lots of warm water (he took flasks up for nighttime). Also eating as much as possible and exercising as much as possible before treatment starts will help. Also the same during treatment. 

Hope this helps, everyone on here will try to answer any questions.

keeping the faith for everyone 

Milly

Thanks Milly, as always :happy:

Thanks Milly, as always :happy: