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.

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;

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
 

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