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.

Good to see you looking well Douglas  

my husband has had a weeks break from his chemo meds, and is already feeling more energy, more appetite and this has inspired us that he will only feel so awful during treatment but that at the end he will hopefully recover well, as you are. 
 

Hi Daisy 

thanks i just posted the photo to show that your hair does grow back and that the wrinkles sunken eyes and hollow cheeks do eventually start to fade , i know it can be quite a shock to friends and family the changes to your appearance during treatment and a wee bit distressing  as you wonder is this it for me , it did stop me going out in public for a few months but hey ho thats in the past and people recognise me easily now altough i still am 18kg lighter but all the better for it , anyhow if you need any support during your journey  just ask as i have told others i am happy to help, take care and god bless.

regards

Douglas 

Update from the front line!
hi all, 

Went to see oncology today for next phase. Told us that he is disease free yay,pathology and response to chemo was all brilliant. BUT, there is always one!. They have said that standard treatment is now to give 4 more FLOT. The reason being that some of the clever little f**kers maybe hiding somewhere or are so small that they are undetectable, so just in case they have plans of setting up home they nuke them.

We were expecting it, so not a shock, but we are trying to get our head around that this is actually good news!
He is quite 'upset' about going through another 4. I really get what he means. It will soak in for sure.

Hospital described it as a standard offer and belt n braces.

So good, but we feel a little deflated 

Hi Everyone,

The big day arrives on Tuesday, being admitted on Monday just wondering what people took into hospital to keep occupied, or what they wished they had taken in? Secondly did anyone have a change in there voice after the operation. Because of covid im trying to take in as much as possible as there are no visitors allowed. Been advised i will be in at least 14 days, so any tips, advice greatly appreciated.

OMG Ray, 

I was just thinking about you ! I was thinking about your op and birthday!!! Don't worry though, not a pervo/stalker!!! I was coming on to post to you and there you were.
 

Anyhows- what to take in?. He took in a book, pants n t- shirts- that was it. - he was in a gown for 3 days.Small toilet bag. and essential ear plugs- quite noisy in there.TBH he had no time to do much. Between post op physio's getting him up & walking the ward,the next day and everyday after. He slept a lot. He also chatted with the blokes in the ward, who were all having the same op. I did take him a paper in everyday and a latte after day 3. They chucked him out on day 7! Probably on the early side as it was xmas eve! Your phone, charger and headphones= essential. We also did Skype calls for kid purposes as only one visitor allowed.

No change in voice, but an annoying cough. Which improves hugely with his chemo Dex.

He had a great histology and is now doing the post op chemo. Which of course is great fun.....  not. He is even almost mastering the post op eating- he's managed curry, pie n mash, gravy dinners etc. At the start is was all mush, but by week 6 he was on everything. He gets dumping ( what a surprise), but I really getting to grips with it.

So , good luck Ray and a 'happy' birthday. Getting rid of the *** will be the best present.
 

Wishing you all the best of luck for your op Ray, do come back and let us know how you are getting on when you feel able to do so! We are all rooting for you x

Thank you for your comments and advice, will keep you informed of my progress.

Hi Ray 

we are all thinking about you today , i am sure all will be fine and look forward to hearing how you are doing in weeks to come , take care

Douglas

Hi Ray, just wondering how you are getting on? Hopefully you are recovering well. 

2 weeks ago my world fell apart, when my husband of 42 years was diagnosed.  Tests done so far suggest it has been caught early stages but PET scan today will reveal the truth.

I am still numb, can't ear or sleep  properly and keep crying..  It's so unfair.  Our daughters are also in bits, both of them idolise their dad and are worried sick.

How long will it be before we get a response to the PET scan result?  If it is early stage, will this mean FLOT and surgery?  It would be good to hear from those who have already been there.  He is still managing to keerp down soup/bread and the usual milk shakes and ice crream, which seems to have halted the weight loss.

Just to talk to someone who has experience of this would be helpful;

2 weeks ago my world fell apart, when my husband of 42 years was diagnosed.  Tests done so far suggest it has been caught early stages but PET scan today will reveal the truth.

I am still numb, can't ear or sleep  properly and keep crying..  It's so unfair.  Our daughters are also in bits, both of them idolise their dad and are worried sick.

How long will it be before we get a response to the PET scan result?  If it is early stage, will this mean FLOT and surgery?  It would be good to hear from those who have already been there.  He is still managing to keerp down soup/bread and the usual milk shakes and ice crream, which seems to have halted the weight loss.

Just to talk to someone who has experience of this would be helpful;

Hi everyone, 

Milly - thanks for your words of encouragement as always, they really help.

Scott - thanks also,  I'll keep you informed over the next few days of progress. 

Distraught- I am probably not the best person to reply as my Dad's situation is not really the 'norm' - we were diagnosed stage 4 and only palliative (but things have changed slightly). I know that catching OC early gives you the best outcome possible so that's a real positive for your husband and your family- good look with your next stage. 

Lee

Hi distraught

In the words of hilts - welcome to the club that nobody wants to join.

I was diagnosed at the beginning of October 2020, and like a number of others on this little chat of ours was put on the FLOT/surgery/FLOT path.  Surgery was back on the 2nd March and the 2nd round of FLOT completed on the 17th June.

I can't sugar-coat it - it is quite a hard journey, think rollercoaster and bumper cars, with the odd twister thrown in.  You are currently going through the assessment phase to check and double-check that the path is suitable for your husband.  There will be a team setup in the hospital who will probably meet every week (a multi-disciplinary-team (MDT) who will discuss the PET scan and if confirmed localised, then there will be a final laproscopy (where a camera is inserted) and the major organs checked over for any signs of spread.  Once all confirmed OK, then FLOT/surgery/FLOT will kick in.

It's great that he is still eating well and it's important to keep the weight up and to ensure that your husband is reasonably fit for the journey.

We are here for you and can answer any questions, however gruesome they may sound.  

And feel free to rant!  We've had some great ranters on here (I won't mention any names - cough).

You should also have access to an Upper GI nursing team who will usually be on the end of a phone to answer any ongoing questions around treatment and timescales.

cheers

bfg

Hi

Hilts – great news on the cough.  That’s been bugging since the op, so must be a relief that he’s on the mend now. Also great that he’s not on the minced and moist diet (I still have strange dreams about that). 

Scott, Lee – thinking of you both with your respective fathers going through the op.  Do feel free to throw any questions our way!

Milly – holiday in the sun!  Outrageous behaviour.  Let us know where you are staying and we can all come and visit!

cheers

bfg

Hi Distraught

there are a few of us on here who have been posting for over a year and throughout the 50 odd pages of posts , in reponse to your PET scan question in my case it was about two weeks after the scan when i first met my oncologist , this is the point when you will get an indication of the grade of the tumour and size , in my case it was less than 3cm  and non invasive , the treatment plan was agreed and then about a month later i started 8 weeks FLOT followed by a months rest during which i met my surgical team and had the necessary pre op assesments ,  then on to the main event 10 hours surgery , two weeks in the ICU and general ward and then home , i was seven months start to finish and believe me as the patient it absolutely flew bye , i am 16 months post op and probably will be recovered to the  level i want to be at by mid 2022 , i know it's a bit much to read through 50 odd pages of posts but there are stacks of hints and tips in there , the main thing is NHS cancer care is second to none and the people who specialise in the oesophageal cancer are at the top of their game , if you have any non clinical questions feel free to ask them on here and i am sure someone will be able to offer some advice , there are quite a few who post on here who are the patients family and i understand you have a different perspective , as the patient i can assure you you never feel neglected during the process but it does require an element of patience to get through it , don't Google anything  just ask on here !!! or phone Cancer UK , take care for now and keep posting

Regards

Douglas

Hi y'all, 

Hope you are all chugging along. Strange things going on with my notifications. I used to get an e mail for every post, but I though we had all gone off living it up in the Caribbean or something as I was soooo quiet, I get a notification this morning from Doug, to see that there are loads of posts that I have missed- any IT/forum wisdom out there- I checked and I am still following the thread ???
 

Scott/Lee - square up to it and smash it! You'll be done soon enough. In my humble opinion distraction IS the only way to get through the 'big day' . Keeps,the shredded nerves in check- a bit(: Scott- I know exactly what you mean about knowing people personally. As I have said before, we all just might know each other , without knowing it LOL. That's the thing about this site and why I reckon it is soo helpful, we all spill and vent in the 'comfort' of 'privacy/anonymity' only a couple of million people can see it eh. We can and do spill our deepest, darkest and private  without 'worrying' what people might think- not that we should worry about that, but we all probably do !
 

Distraught- Welcome, I am glad you have found us; all fellow travellers and experts in the 'lived experience' (: . I think I will be cheeky and say that this part- where you are - is the worst part of all on this rollercoaster. The shock, disbelief, tears , anger and all the other human emotions exploding. My then 56 yr old husband was diagnosed out of the blue in July 2019, a bit of clogging with food and coughing. E Day (endoscopy day) 29 th July. MDT appointment 8th of August ( we delayed it by a week for holiday- what else are you supposed to do eh) in that time as well as holiday, PET & CT scan etc. That MDT appointment is when you get all the info staging and treatment plan . We got a T2 not lymph's or spread ( Downgraded after surgery to T1b- don't worry , you will become an expert at all the terminology!) As for what you'll be offered, there are soooo many variations, but it will no doubt involve chemo at some point. Keep coming back to ask and vent away. None of us are medics , just as I said 'experts in the lived experience (: Once you know where you are going with treatment, it does get a bit better. Also, as Doug says, google and the net in general is a total horror show; we all have done it , knew we shouldn't and probably still do, but it bears NO reflection on the reality of most of our experiences. 

US- well , cough had gone ( big clapping emojis), back on full diet! BFG- the 'horror' of minced nd moist! at the time though it is the first post op foray into food, so a great achievement, as you look down to your much awaited first meal and tah dah ! LOL - the best incentive ever to move on....

 BUT, there is always one or two- he has had a massive allergic reaction again- this time to the iodine they used on his op site!!! Not anaphylactic, but pretty bad, scratching like a flea bag. Does anyone know if all this treatment makes you more prone to allergies? As his body decided it didn't like the platinum either ):

Anyhows, 

Keep keeping the faith folks

Hilts

Hi all,

Just seen all the latest threads!

So Hilts I don't know but maybe the chemo does make you more sensitive? Kev had the vasculitis on his legs which were covered in red/purple blotches and itched as a severe reaction to sulphoids in the antibiotics he was given. Hope it goes E45 may help? They gave Kev steroid cream and a tub of Hydromol (like lard) lol.

Lee/Scott all good wishes to both dads. Distraction as Hilts  says! And yes I talk to Kev about you guys like I know you all which shows how helpful this little band of OC warriors is to us all! I think of those who haven't posted in a while. Great to hear from RayB!

Bfg you were definitely quicker than Kev as he was diagnosed at end of October but didn't start chemo until end January which was a long haul especially during another lockdown! 

Distraught - I hope it helps that there are a number of patients and family on here who can relate to how you feel and to know that you can come the other side. I'm not going to repeat what others have said already but I agree the waiting/not knowing is very difficult to put it mildly. I was gagging each morning I got up and the fear is awful. Once the treatment starts you have a plan to focus on.

My husband's path took some unexpected and life threatening twists and turns as you will see from my previous posts should you wish to read them. However, with the brilliant care from the experts and all the NHS staff he has come through it, against the odds at times and we are beginning to get our lives back.  As others have said Google is not a friend and the stats are out of date and don't take the individual into account. Everyone on here whilst having similar treatment has not experienced the same effects/outcomes. Be assured the upper Gi Teams are brilliant and my suggestion would be ask them anything and take everything a step at a time. It's not an easy road but it can be done. I found Macmillan nurses on the support line helpful. Also some have used Maggies. We only had phone calls with consultants etc and didn't meet the Oncologist until January. Look after yourself too and ask for support if you need to. The team did a holistic assessment and I asked for physiological help as I knew I was finding it tough as we have previously experienced traumatic situations.  Sometimes talking to strangers is easier than friends.

keeping the faith for everyone 

Milly
 

Morning all, hope everyone's OK and keeping on trucking along on their respective journeys.

Some good updates to read about your Dad, Lee and progressing with the op to throw everything at it and Hilts with your man breezing the corrective op and back to his antics with the pints !

Just completed the 4th and last, post op treatment yesterday - so a week of feeling grimey and GOG like (BFG-ism!) then can focus on trying to get fat again over Xmas - bring on the Quality Street, haha !

Thanks for all the kind help and support along the way on this journey, it's been a roller coaster but you've all kept pulling me along and towards the finish line !

At my hardest point, post op treatment Round 1 when I felt the worst I ever have, and said to my Wife (amazing Claire, soldier throughout and many moments of feeling like a single parent - not easy orchestrating all 4 of them single handidly whilst I was KO'd in bed some days, but she's trooped it thru and am in awe of her) I don't know how I can do another 3 of these and felt like I was going to have to Tap Out early, but you all kindly encouraged me through, and I've done it !

Thank You !

Hi Redski,  great news well done . Sounds like you have all got through it together,  big congrats to you. Enjoy those Quality Street!.

Lee

HEY Redski, 

Good to hear from you. you've done it too then - thousands of clapping emoji's. FINITO x

The post op chemo is tough, tough, tough, BUT through it you all are. In my view that is when recovery really began- so tins upon tins of quality street is your xmas 'research project'. As for mine and the pints, nothing keeps him away from that research (: The cough had now completely gone, so he can no longer claim 'medicinal' - psychological therapy will be his new quest ): 

I can certainly relate to your Clare (:- it's weird though, I felt okay about it at the time,  it was like 'right, this is how it is going to go' it was afterwards that it caught up with me when I had a lot less to do !. Flat spot about 4 months ago, but feeling better again about it now.

My notifications are back today- weird 

Anyhows, off out with my friend for my birthday- husband in charge of home front with NO beer

Keep on keeping the faith

Hilts x

Happy birthday Hilts...after the last year or so I think you well deserve a big celebration...enjoy