Hi,

Ive just been directed onto this thread, not even sure I'm posting correctly ‍♀️
anyhoo, I was diagnosed with stage 4 oesophageal cancer in 2018, mts to lymph and liver (4), told I'd probably have 5 months no treatment, 11 months with, fast forward 2 years and 7 months later I'm still here. Various lines of chemo later, my latest scan CT and MRI have shown that there are now only two mets in the liver, one 11mm and the other 10mm, nothing in the oesophagus or lymph nodes. So from being definitely not operable they are now offering surgery. I have a zoom consultation with the Prof on Wednesday so will find out exactly what's on the table as it were! was 56 years old female when first diagnosed, non smoker and didn't drink, only symptom was food getting a bit stuck! 
ive read all the threads to this and must say I'm pretty trepidatious about the surgery but as it is potentially a game changer, I'm not going to refuse it.

Hi Tabnabs,

This is such an inspirational post and thank you for sharing your story with us all. Regarding  surgery everyone is unique so there are lots of different experiences. My husbands actual surgery couldn't have gone better what happened a week later was just plain unlucky. The hospital has done a review as it's never happened in 20 years of doing the operation. However they saved him and he is now home.

I hope your consultation goes well and it's great that you've joined this thread. A real boost for Lee and his dad too.

Keeping the faith

Milly

Hi any thanks to those how've replied, it means so much to me that I'm not alone! Yes, it certainly has been a rollercoaster and I've shed more tears than you can imagine, but have tried to be optimistic throughout. Now it's a case of thinking long and hard.

p.s. Cat is Teddy, sealpoint siamese, our other two are Tonkinese. Love your cat Bfg!

Hi Gerrie,

I can only agree with the previous comments. We also had the 'pep talk'. As I've said before my husband's situation is a bit unusual and his journey is still bumpy with 3 hospital visits this week! 
 

There are success stories and you are one of those who has done remarkably well although I appreciate it can't have been easy. To have surgery or not is a big decision and as suggested you can talk it through with the specialist team. They have been brilliant and we have had a specialist nurse visit us at home too.

We are here for you whatever you decide.

Keeping the faith 

Milly 

Hi 

Tabnabs- look how far you have come. I totally second what BFG has written. I am not the most 'diplomatic' writer at time and he has put it rather better i think (:

The Medics always give you all the 'senario's' good , bad and downright ugly (:

Many on here have been in your position and if you are operated on like BFG says most/ all/ top of stomach is whipped out. Another poster on here Doug- is a year post op and pretty much there. My guy is 6 month post op and 2 ish months since last 'delicious' chemo.

There is no way they would even offer you surgery unless you were suitable, so go and have a 'pint' or 4 - no only joking and digest what you have been told.

Ask away- none of us on here are medics just. Fellow travellers 'living the dream'

best wishes

Hilts

OMG - Millie you will be not happy with me- I FORGOT for the first time ever ever . Always keeping the faith x

PS- like the cat. We bought our cat about 6 yrs ago from a litter on gumtree for £30, she was six months old.  Over the ensuing 6 months she 'turned' from a short hair grey thing, into a massive cat, with huge eat tuft, beard/ruff a tail like a feather duster, back legs like car wash brushes.  We don't know the paternity, but the mother was an average white with patches moggy.  Most people and us defo think she is one of those 'forest cats', most likely Norwegian. , not fluffy and big enough for Maine coon. Must be some randy Tom cat who broke loose in the district (:

Hi Hilts,

Not sure what you meant by I forgot unless you forgot about the C word if so I'm very pleased! 

Unfortunately, Kev still has a pleural effusion so came home with antibiotics. They said he could stay in but they and we felt being home would be more beneficial. 
He has since had a severe rash reaction to the antibiotics so more blood tests etc. It has looked a bit better today you can actually see some white on his leg and it's no longer purple looking and as sore.  More red so hoping it goes. 
 

Respiratory clinic today. CT Scan to be booked to determine if they can try and drain again! Different antibiotics so hoping he tolerates those. He is allergic to penicillin so it's more limited but there are more these days. All this has resulted from the second emergency op. The consultant even came down to see him on Tuesday - he and the surgical team have  been brilliant.

Re eating he's doing pretty well overall not quite pizza and 4 pints lol. On Fortysips as well. It's the muscle wastage after 5 weeks in hospital and not being able to do much because he gets out of breath. 
 

Anyhow he's home and it's going to be a longer road but at least he's on the road! 
 

Keeping the faith

Milly
 

Hi Millie, 

I meant, for the first time in for a long time, I didn't sign off with 'keeping the faith'. It has almost become our 'handle' - remember the old CB radio. A lucky charm if you like, and I was miffed with myself for not doing it.

I am glad your man is home. No doubt good for his soul - pizza and burgers etc took mine about 10 weeks post op to achieve, beer - 4 pints about 4 weeks ago, so plenty of time for Kev. He has done 3 'rounds' with the surgeons and WILL get there. Seems that most take a year to recover properly. Despite my husband doing okay, he still gets v v tired & grumpy........ grrr and coughing.

Yes, husband and now I have noticed the muscle wastage, he legs were not chunky before, but they are now sticks and his butt has halved in size, bless him. I think when the body is lower on calorie input the metabolism scoffs the muscle.

Fortsips mmmmmm- you think with all the advances in medicine they would have up with something like mohito or IPA flavour.):

so

Always keeping the faith

HILTS

You are all so amazing, my hat off to you all, such bravery and determination. 
Our oldest daughter's wedding reception is in August and our son's graduation in July, so lots to look forward to and to give me the impetus to get through this next chapter.

best wishes to everyone 

Gerrie

Hi Hilts,

I didn't notice that yes it's our 'handle' rubber duck we got a convoy! Lol.

Your husband swimming in the North Sea made me smile. Many happy hours as kids at Sutty. I remember sitting in those folding aluminium deck chairs and letting the sea come in around us - such simple fun! Oh to see the sea. I've been to the seaside every year at least once and often lots more than once since I was born in 1962.

Keeping the faith

Milly

Hi Gerrie,

How wonderful that you have two special events to look forward too. Focus on those too. A nice distraction - better than pressure washing the patio!
 

Keeping the faith

Milly

Tabnabs - So sorry you've had what sounds like very scary news. I'm right at the start of the journey but I'm thinking of you and I hope that the next steps go smoothly and you come out the other side with the best possible quality of life that can be hoped for. 

Personal update - So I'm off to spend a few nights in a London hospital next week for a PET scan and "an exploratory procedure". Looking forward to whatever new superpowers the radioactivity gives me anyway ;) I wish good luck to the medical team trying to keep me still for an hour in the scanner... 

Hi Milly,  good to hear he is home.

Lee

Hi Milly,  good to hear he is home.

Lee