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

Evening all!

Well it's half time so I thought I'd do a quick post!

Happy birthday Jae! We had a long wait from diagnosis (12 weeks) until knowing my husband was on for FLOT/op/FLOT. Although second FLOT is now uncertain but we will see. It is a really stressful time. Once you have a plan it is better.

Lee : I'm sorry to hear that your dad hasn't been well but thank you for sharing  the info re COVID Jab - my husband has had both his but before and after chemo not during- no problems. I hope your dad soon starts to feel better. It's very hard for you too.

BFG - congratulations on finishing your second round of chemo! Yes celebrate . Not sure if the celebration icon will work! 

Hilts - sounds like you have some specialities  of your own!

Tabnabs - go girl! Glad you've made your decision 4 pints and pizza is your aim too lol.Congratulations to your son! Proud moment!

My update - rash still there but not as inflamed. Surgeon spoke to us and he's requested the CT scan re pleural effusion. So far so good dare I say with new antibiotics! 

Hope I haven't missed anyone in this growing band of Oesophageal warriors! But if I have keep it up seems to be the new 'catch phrase'!

Keeping the faith 

Milly

Had my PET scan Monday, they cancelled my laparoscopy on Tuesday and today I found out why. 

Sadly, despite having no other symptoms than a problem swallowing my cancer has spread quickly and had gotten into my bones in several places. 

So, unfortunately, I'm now off down the palliative care route. Of course I'll be making the best of a bad hand and not being too depressive about it!

Just got to get passed tomorrow when I have to inform the family... 

Oh dear I'm so sorry to hear your news, never give up hope though, you never know what's happening in the medical world, advances all the time! Will keep you in my thoughts and especially tomorrow with your family.

take care Gx

Hi Jae, sorry to hear your news. Don't give up hope as there are people on here who was also given similar news to you and are still here to tell their stories (my Dad was diagnosed with stage 4 and told he was inoperable- he is going through second round of chemotherapy 10 month after diagnosis as we speak). 

We keep getting inspiration from stories on here (Very recently Daisy's husband), so stay strong in these very difficult times. 

Lee

Hi Jae,

I reiterate what others have said on here. Gerrie and Daisy's husband are examples of what can happen. There is also a chap named Dave who has been cancer free for several years after being told it was inoperable. 
 

I definitely agree with Hilts you are allowed to be whatever you feel. Overwhelmed is definitely how we felt. Let your feelings out. Plaudits didn't help me 'you can get run over by a bus! when you feel like The f------ bus is heading towards you! 

Just know we are all here and if you want a rant or just to share what's happening please feel free.

Keeping the faith 

Milly

Thank you all for your kind words but you needn't worry too much about me. I'm currently taking the news as well as can be expected, putting my big boy pants on, and just preparing myself to deal with how others take the news (which is a bigger concern to me than how I do!). 

I've had a good life and whether I have a few more months, a few more years or (putting my fairy tale ending hat on) a few more decades it doesn't matter too much to me. I do worry about my husband though and leaving him alone as we enter middle-age seems truly cruel. So I'll try to hang around for as long as I can and keep smiling whilst I do! :) 

Next up is a meeting with an oncologist to discuss some "light" chemo to help alleviate my symptoms in whatever way it can. 

Oh Jae!

It's at times like this I wish i was more of a philospher with a poetic touch than a lumbering 6'8" giant with size 14 feet.

Those of us on the journey are acutely aware of the reality of what we have and come to terms with it in our own way. 

As others have said - don't hesitate to use us to rant and rave or even joke.  I remember when I did tell somebody that after finding out about my condition that for the first time in the local supermarket, an element of doubt crept into my mind as to whether to buy fully ripe or green bananas.

Everything else has been said by others - so not going to repeat  :-).

bfg

BFG! Yesterday I was more traumatised to discover I'm not 6'8" (203cm) like I'd always claimed but 202cm! I felt like a total fraud. 

Giants united! :) 

Don't even go there Jae - just before my 2nd round of chemo the machine measured my height at 199.5.  I was so outraged they went and found another machine which confirmed it.  Somehow, whether it's the elevated position post-op or just lack of excercise, I've managed to shrink.  I still can bang my head on a door frame though and hoping that when I start excercising and stretching soon, that I get back to my natural height.  I'm still not up there with my 6' 10" brother though.  Can you imagine the 3 of us drinking beer together?

:-0

Hi glad to see how positive you are being. I am in my own little bubble too an take each day as it comes. Sat in pub with grandsons an daughter had a nice meal an they playing snooker. Off to Burnham tomo so have rested most of today as do find get breathless. I have friends who give examples of family members who are still going an had same diagnosis of short term life span but still going so I do think our mental state does help keep us well. Hope things go well for you xx

Hi glad to see how positive you are being. I am in my own little bubble too an take each day as it comes. Sat in pub with grandsons an daughter had a nice meal an they playing snooker. Off to Burnham tomo so have rested most of today as do find get breathless. I have friends who give examples of family members who are still going an had same diagnosis of short term life span but still going so I do think our mental state does help keep us well. Hope things go well for you xx

Fingers crossed for us both! 

Planning a nice holiday ASAP in Cornwall with my nearest and dearest. It'll be great.