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

Hilts/BFG, Yeap you both called it right. A staging laproscopy it seems though my follow up meeting is booked for Wednesday and they claim that'll be where I hear about treatment which sounds a lot quicker than you got. Fingers crossed anyway as my husband is currently in such a mood due to lack of information I am walking on eggshells!

Turns out I'm getting my own room whilst I'm up in London. Not sure whether they've accidentally got me down as private... ;)

My birthday today but I'm feeling so uncomfortable with stomach problems I've taken to the duvet. What a party animal! 

Happy Birthday JaeInKent

It's a nervous time and all the information currently is based on what ifs - and the team you are working with will be doing their best to get that information to you and your husband. I had my plan detailed within a couple of hours post laproscopy. My surgeon at the time advised that I would know straight after I woke up and true to his word,  one of my overriding memories of the day was a huge up just as I was coming around. 

Hi everyone...just a quick - my Dad has been feeling really bad the last few weeks- extreme hot and cold spells numerous times a day, constantly feeling/being sick,  loss of appetite,  loss of weight,  loss of energy etc. 

Tuesday just gone was the start of his next 3 sessions (after a weeks break), but he was not well enough. 

After meeting with the oncologist,  we now think the extreme side effects are due  to my Dad having his second covid jab!

The oncologist has said that hes been reading a lit lately of cancer patients whom have had two jabs,  having adverse effects whilst on chemotherapy!

He also said this is a learning curve and there's not too much info out there!

I guess we just have to wait a little longer to see if the effects were off so my Dad can finish his next three sessions. 

I wanted to share this info as I'm not sure of the current  situation in the UK so this may give an alternative view of the covid/chemotherapy perspective. 

Lee

Firstly many happy returns to you Jaeinkent, be kind to yourself! All the best for upcoming procedure.

lee sorry to hear about your Pa, must say I didn't have a problem at all but then we're all different.

Bfg, had a Burmese girl many years ago, gorgeous! Also not too worried about losing weight , more worried about being told I'm not fit for surgery, chemo, steroids and lockdown ( never had a problem swallowing after first lot of chemo) has taken its toll on the old bod! 
Hilts and Millie, enjoying your banter

got to my oldest daughter's hen do yesterday, first one I've even been to! Today my son just got his uni results and has a first! So for those reasons and many other milestones to come in the future, I've decided to get my big girl pants on and go down the surgery route. Hopefully I'll hear Monday when I'll have my assessment 

sure am keeping the faith!

Evening All.

a busy hive today, all while I've been at work.

i've got a few things to come in on

Jaeofkent- Happy Birthday.make sure you get cocktails and/or cream tea -own room eh-if you were 'private' they probably wouldn't be this quick or thorough... they only do 'non complicated'stuff (: kerrching,LOL. I feel for your husband and know absolutely, exactly what he means. I wonder (ask him) that the feeling of the 'lack of info' is more about 'fear of the unknown', certainly was in my case. It goes along with the feeling 'why us' etc etc .Felt very much " they are not telling me everything", " they are not giving me enough detail" etc. Of course in hindsight they were telling us ALL they knew, the detail is often unknown to them, it is only when they get your 'dodgy' bit out under the microscope they will know the exact state of said dodgy bit- you will get a long list of what looks like something Bletchley park will need to work on, but folk on here helped my out. It is also a kind of 'bereavement' a sense of loss, like a big bulldozer is going through your world, the anger, disbelief, denial  bargaining , the search for answers ( look up Kubler Ross) etc.
i often think of us 'watchers' ( not you victims) when our loved ones get this sort of news , the 'journey' through for us feels like we are 'walking the line' like a high wire we can continue walking as long as nothing else wobbles it. I may be talking sheeeite, but hey just emptying me head.

Leechaps- very interesting that your Dad and Covid jab, now, I have had a spot of trouble. To cut a very long story short 4 yrs ago, Numb big toe, MRI, something called Tranverse Myelitis on spinal cord, Neuro's had no idea what caused it, but highly likely flu about 4 months before, no treatment etc. Fast forward to about 4 weeks ago. Said big toe + other 9 start buzzing. My theory= jab has certainly generated an immune response like it supposed to but has pee'd off my already miffed spinal cord, which was miffed after previous grossly overcross immune response. Low and behold I look on line and Guillen Barr syndrome is listed as one of the 'possible' side effects!

BFG- Even after a seriously pants time- we both have still managed to keep laughing- OMG, sometimes at the most inappropriate things. If you can't laugh what can you do eh. I always knew when the chemo was wearing off the sense of humour would return.

anyhows of now to 

keep the faith

Hilts

Dang - just read my post and that should have been a huge "thumbs" up. 

I did wonder! A huge what?

LOL BFG, 

I get it :wink:

the mind does wander I guess ! (Smiley face with tears emoji) ( is it just apple's that doesn't do emojis , or is it this site)

keep it up ...........

Hilts

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... 

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

I think with three of us we might actually get in a local newspaper or at least some free drinks ;) 

I like the idea of demanding a "second opinion". 

"What for Mr K? Your diagnosis?"

"No not that, my height measurement!" 

:D 

Fingers crossed for us both! 

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