Hi Hilts,

I have been hiding away eating my body weight in food!! Our wedding was amazing, the best few days then came crashing down with the chemo, we will be on round 5 of 8 next week, nausea is continuous as in never gets a break from it, he moves he coughs he laughs, oppps he's going to be sick, went in the garden yesterday for 5 mins, followed by a full on sick fest, we now have the added arm pain from the IV, they kindly warmed it up last time and flushed it with saline so was much better. We have still yet to actually see the Oncologist, Shaun had a CT scan weeks ago and we get the results on 18th.

I'm angry still with everyone and everything but we did have a laugh this morning, I have bought Shaun some new shorts as his were a little big, he puts them on and asks why I have bought him pedal pushers!! I'm laughing writing this as they actually look a lot like pedal pushers

oh the things I do for a laugh x

Big love to you all, if only we hand sand and a pool it would feel like Barbados out there xxx

Sam n Shaun (the Gretna runaways )

A lovely wedding story Manfyh, and your Pedal Pusher antics made me smile too - thanks.

Emsnan, congrats on the wedding tomorrow - that is awesome !

Hi Hilts, I am new here, I have read through about 6 pages of this thread before I have decided to jump to the last page. I am the latest unwilling member of this club of unfortunates. My diagnosis was confirmed on Monday 25th July. My first symptom was difficulty  swallowing at the end of April. The pace has been frantic since then. I was told that Monday was my D-day, if it has spread, it is "incurable", if it hasn't, it should be operable. I was so nervous going into that meeting, only to be told that I fell into a grey area . It has spread to my stomach and a very localised lymph node, so I now have to have a PET scan to make sure it hasn't gone further. I never thought that I would desire a horrendous operation with at least 6 months recovery so much. I also have to have another gastroscopy, they want to do an ultrasound of the oesophagus walls. I just thought I would join this conversation as everyone is in the same boat. Love to you all ️

Aha Ian, 

Welcome to the club! Indeed the one no one wants to be in, but here we all are .

I bet you thought you were a rare breed- until you looked on here! Yes ,I think there are over 1000 posts on here- so I guess we are as common as muck(:
My husband was 56 at the time of diagnosis, Fit, no 'unhealthy' habits apart from a few beers now and again, but had been suffering with acid regurg.  for many years. This type of cancer is not very linked to the usual suspects, smoking drinking etc. Acid is the thing.

Belive it or not you are at the very worst part at the moment. It was exactly 2 years to the day tomorrow we had our E day ( endoscopy) - what we thought was maybe an ulcer or two, exact same symptoms as you with bit of cloggy swallowing.  That  week was awful. Exactly what is going on with you at the moment, CT scans, PET, MDT meeting - all happened within a week. Then bingo the PLAN. I did feel a tad better once we had something to focus on  They are very fussy about knowing exactly what is going on in the bod, as the operation is seriously heavy duty, so they need to know what they are looking at. If op in not the path, then it will be managment of a 'chronic' condition- before you pass out- there are a few around on here that are that , one 10 years down the line; one 'inoperable' who is now completely disease free !
Yes, it is something you'd rather not have , but you're in a good club a band of brothers x

Ask away- we are all experts in the 'lived experience' , living the dream etc.

Start keeping the faith 

Hilts

Yes Hilts, I am keeping the faith, in our situation, you really do see the very best of our NHS and the people within it . Add to that my wonderful supportive wife and family, and now my new brothers in arms here, I really do say " bring it on"   

LoL Ian, that's the ticket ! Bring it on , get at it .

As for the NHS - OMG , incredible stuff, when you really need it they are there, people always criticising it, but we had nothing but amazing stuff. I worked out that if we were in the states it would have cost somewhere in the region of £150,000-£200,000 with all the stuff we had- I guess that's why their survival rates are a tad dodgy, if you can't pay, you don't get. A word of warning - don't look at google or the net in general- it is a horror show, bears no resemblance to reality - we all do it though.(:

my husband has a wonderfully supportive wife too ( me ) . We have some kids , who were then tweens  at diagnosis-  now very much TEENS - arrg (: 

In terms of 'emotions' that is a whole 'thing' in itself. I would describe this stage as surreal , with a huge feeling of WTF(:  in fact I still feel that now. All unsundry giving 'helpful' advice ...... they can't help themselves bless 'em. 
One thing that we decided right at the start was to keep everything as normal as possible. That cold that was going around help us as the whole world was acting weird anyway (:  Another ( two) was keeping a sense of humour- We laughed at the most crazy of things.

Well , off to Greece tomorrow, so our house is its usual 'stress free' zone- oh how I wish. We did Florida in April and that was NOT a bit relaxing arrg, so hopefully this one will be a tad more. When something major happens in your life, we decided to blow all on having a good time and making memories

Ask away and keep that faith.

Hilts

I love your attitude, I know ours will be the same . We have 3 grown up children and 5 lovely grandchildren, and still lots of holidays to go on. Far too much going on, so I ain't planning on checking out any time soon. We have a holiday planned for October 9th to Spain, which we have sadly had to cancel. Thank God we had 2 in Portugal and Spain earlier in the year to keep us going . Have a wonderful time, I know you will.. You sure as hell deserve it . As for googling, yes, I did it, but have stopped now, I am in the best hands possible x

Hi Ian, 

I don't usually post as much these days but I am taking some breaks from all the chaos here.

You won't be cancelling your holiday, you will be deferring  it (: . We had our  Florida hol booked 2 years ago, then that cold kicked off and diagnosis, so this years Florida job was kinda closing the circle.

Many on here did the same, DEFERRED. Some are MIA on here at the moment , because they are off warming the old bones (: or getting married - you know who you are (:.

As for not checking out now- nope you're NOT. This sort of thing does have a nasty knack of 'focusing' what awaits us all at some point ! BUT, you have some stuff to do in the next few decades eh. In a strange way, now that we are 2 years post diagnosis, the team are still all over him like a rash, so anything that does appear anywhere at anytime , even the little toe, they will be on it (:

Once your plan is in place- all the appoiments will calm down which will feel a bit weird.

this board has been my only source of info & calming measures since the start- can't take it away, but knowing you are not alone.

Right , off to ref the next kid punch up(: no more posts for at least a week

keep that faith

Hilts

Welcome Ian and hi to everyone on here,

I am one of the MIA members Hilts referred to in her last post. We have just returned from our European road trip which was originally planned for 2020.....

Anyway I'm pleased you've found us Ian. I like Hilts am the 'onlooker" and supporter. My husband aged 62 was diagnosed at the end of October 2020, lots of tests and told on 31st. December.that he was eligible for the operation.  Eight Weeks. of FLOT started end January and the Oesophagectomy was on 4th May 2021. The initial operation was "textbook" but complications followed a week later. I won't go into detail as it was extremely unusual. Anyway 2 further emergency  ops followed  all within 8 weeks. So last op 1st July 2021. He then started the post op FLOT at the beginning of August 2021! He managed to get through this and was told exactly a year to the date of diagnosis that he was 'visibly free" of cancer. Fingers crossed. 

As Hilts says the waiting is extremely difficult and once you have a plan it does help. I do however acknowledge everyone's situation is different and Google is definitely not the place to look. We all did it!

My advice would be to try to take each step at a time. I certainly crumbled at times and that is to be expected. This forum gave me hope at times when I felt there wasn't any. There are lots of different stories and outcomes on here including those who have defied the odds. My husband became critically ill but the NHS saved him and he did everything he could before and after the operation. Gaining weight  before the operation if possible is a good idea and getting as fit as possible. My husband joined an active recovery group via zoom and we did lots of walking (COVID was still a problem).

Any questions  just ask lots of people will help.

Andi  - great you made it to Turkey!

keeping the faith

Milly