Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Hi Chrissy,

I think the time may vary for results. My husband was told that evening by the specialist nurse that it looked like a Cancerous tumour. It was a shock. A CT scan was done the following week and this confirmed it along with the biopsy.
Its probably best to speak to your clincian. I'm sure you've probably got more knowledge than a lot of us because of your job which I imagine is a double edged sword. The biggest thing I think we've learnt is no two people are the same. You can generalise but everyone's situation and response to treatment is unique. My suggestion would be focus on you, do what you want to do, ask questions you want answers too and take it a step at a time. Some people deal with things by laughing others find that too difficult at certain times. No one is right or wrong. Be kind to yourself.

keeping the faith

Milly

It's definitely a double edged sword. It's very rare I see cancer referrals myself, but I feel like I've seen more of them since I've been on this journey. Though of course that could just be because I'm more aware of it. I actually had 3 today. 

I spoke to my mum again today to let her know I've got a date through and she's in bits. Not much more I can do until Sunday. The girls in the office have been giving me sweets saying we know you can't swallow them but you can suck on it and get empty calories that way 

Hi Chrissy,

Yes being an 'onlooker' is hard. Hoping all goes well on Sunday. Will be sending positive thoughts your way.

keeping the faith

Milly

Howdee Leo, 

Yep, just coming in to second/third the endoscopy info. Husband was told kinda there and then that it looked dodgy, but the biopsies would confirm in a few days. We also got a call the next day from the specialist nurse. The Dr's that do the scoping pretty much know what they are looking at . Biopsy is for confirmation OR something that looked 'off', but not obviously off- if that makes sense, stuff like Barretts etc.

For his Endoscopy, he went on his own!!! and had NO sedation- wally (: We genuinely thought "oh , bit of  acid reflux, maybe an ulcer or two........"

Sedation is a very personal thing. My Dad is quite happy to do anything without, husband will now going forward,always go for sedation. Me- no way would I have anything done without it (:

LOL- with the referrals- once your in any twighlight zone, everything is related to what your in, I bet if you turned on the telly, there would be a programme about it ! I found that at the start and when I came on here, it almost seemed to be catching, everybody I spoke to had a 'story' to tell me.

I feel for your Mam, I too am the onlooker.

Trust me though when I say, once you both know where you're going with this, you'll both feel a tiny tad more sort of in control- don't quite know how to put it really.

what I can say though is ,that this time was the worst by far for me.

Keep the faith and fingers x

Hilts

If I've done my research right Barretts is pre-cancerous cells right? Could become cancer, could stay the same or they could even go back to normal.

Yeah I'm a bit of a wuss lol much as I'd love to be staring at the screen seeing what the consultant sees, I know I'm going to need every drop of sedation. 

My mum's already made me promise to phone her on Sunday as soon as I feel up to it with what they tell me, obviously I'll bob on here too. Feeling particularly bad for mum as she's not local, she's near on 200 miles away so she must be feeling completely helpless. 

Its really good that they give you a pretty strong idea on the day though, means if it's bad news you've got time to prepare yourself. 

My mind keeps going oh its Barretts and you're just feeling worse because of the chest infection, while my gut is saying stage 1. Only time will tell though! 

Just 3 more days of fighting the temptation to ask one of the gynae onc consultants to give me a blood form for a CA125 then in 72 hours I'll be isolating and on the countdown. 

Hi Leo, 

Bless you, you sound absolutely fried. What goes with the CA125- that is a long way from the Oesophagus!
Barrats, is a bit of an 'odd' one. Not pre cancerous, BUT (always one, or two eh), can raise the risk of it turning into cancer. 'Only' 5% ever progress. My mate has Barrats, had it for 10 yrs, is scoped every year or so and omeprazole. It's never changed.

i think pre cancererous is called stage 0. Cells on the turn, but not quite there. Then stage 1-4.

i could be talking total flannel of course, but others may come in on it.

keeping faith and fingers x

Hilts

So basically the cells that are misbehaving but not having a full blown rebellion? 

I am fried! Had myself a little nap after dinner (what little I could manage to eat anyway) but its one of them nights where I can't get warm no matter how many layers and blankets I've got on the sofa. Even caved and put the heating on! 

The other half has had the genius idea of soya yogurts though as I'm lactose intolerant and is hoping they might be more tolerable x

Oooo Leo, 

Soya yogurts !!! . Noooo. LOL. Sorry, I am a really traditional kind a gal with food. Full fat creamy yogurt for me any day. When my husband had trouble swallowing, he melted cheese in everything, large amounts of olive oil or butter on everything.i even came up with what I thought a snazzy idea. Rhoda's cream ( you know the stuff like butter) frozen, then dipped in anything you fancy - like melted chocolate- that is more like it (:

I went for a coffee in town today, with full fat milk of course : the woman in front of me ordered get this - decaf earl grey with soya milk.........I could have cried for her(:

Sorry, I know there are lots of people who like that sort of stuff and I shouldn't laugh, but after the last year I really am of the opinion, do what you like, when you like with whatever you like- ultimately makes little difference. The time that is given to us is most defo for living.

Your summary of Barrett's is pretty spot on- yes, they are attention seeking cells(:

take care

keep the faith

Hilts

Ooooh now that really is a snazzy idea!! 

Haha its only the lactose that ruins the full fat for me! I have odd days where I crave the proper stuff and I'll binge on ice cream or pizza but I pay bitterly for it the next day! Yet I can manage Cravendale with no problems so I have to have that at home. Have just made a nice hot chocolate for the evening.

Ooooh no!!! How can you have decaf, Earl Grey and soya? Who even puts milk of any description in Earl Grey? 

Haha they're the rebellious teenagers of cells x

I had a post op, benchmarking CT Scan today at 11:30am and saw my surgeon at 1:30pm to go through it and my histology results from the lab on what they removed in the op.

Thankful that the CT scan was clean and normal and histology back, all 72 lymph nodes he took came clean back too. He told me to go and celebrate with another Nandos, haha !

So, I'm now waiting to start post op chemo on 6th October which means all being well I should be done by 18th Nov.

Keeping walking forward, head down getting it done.

Hoping everyone else on their respective paths are keeping on, keeping on too and moving forwards.

I had a post op, benchmarking CT Scan today at 11:30am and saw my surgeon at 1:30pm to go through it and my histology results from the lab on what they removed in the op.

Thankful that the CT scan was clean and normal and histology back, all 72 lymph nodes he took came clean back too. He told me to go and celebrate with another Nandos, haha !

So, I'm now waiting to start post op chemo on 6th October which means all being well I should be done by 18th Nov.

Keeping walking forward, head down getting it done.

Hoping everyone else on their respective paths are keeping on, keeping on too and moving forwards.

Oh that's fantastic news!!! Definitely celebrate tonight x

Nice one redski...good news 

Hi Redski

That's fantastic news - enjoy your celebration. I have my 'op' next Wednesday - very scared but nearly there. Good luck with the chemo - all fixed by Christmas 

Andi x

Thank you all, really appreciate it and this thread has been a huge part of the journey and getting through it with all of you and your lovely positivity throughout.

Lee, good to hear from you and I hope your Dad is doing OK too.

Andi, please don't worry ... honestly, you'll be talking away to the anesthetist and before you know it, the next thing you're aware of is waking up in the Critical Care Unit the other side of it and be none the wiser about it.

You can do it !!

Thank you Redski - worried about my fitness level as had a broken humerus which stopped any exercise - so not very fit but surgeon/anaesthetist have decided to go ahead - watch this space

Andi x

Hi Redski

absolutey thrilled for you, well done you and your team awesome news

Tabnabs

x

Thank you TabNabs, hugely appreciated and massively proud of you walking through your journey too. Keep going, keep walking forwards, keep postive, you've already shown a change in direction is possible once, and so it's possible again ! Go get it !

Andi, if you're in for the Op ; they think and know you're fit enough to make it through so have some more faith in yourself - you can do it !

Like a wise BFG once said to me, it's the most routine big op they do ... so these guys know their stuff and if they're taking you through it they know you can get through it.

The physio team will have you out of bed and standing on the day after your op, you won't feel like it at all - but push yourself as it made a huge difference to me over those next few days getting up and moving around getting the lungs working again.

We have faith in you !

Wwhhhhhhoooopp

BIG CLAPPING EMOJIS

Nice one Redski. 
I love a good story of total murder and destruction- not of your good self of course, your unwelcome visitors. LOL.

Nando's , Burger King, Greggs, enjoy the blooming lot ((:::

Andi 47- Don't worry about exercise so much- yes, they love the ultra fit, but most people are not like Usain Bolt! So, if you can't run or cycle very far, try working up the stamina.  They love a good lung capacity.We invented ( probably not) this 'great', free, non gym thing. Walking up and down the stairs. Not any particular speed, just as you normally would. Trust me it is a killer! I managed 1 min and was a jibbering wreck- he worked up to 10 mins!! Twice a day.  If you still have any will to move left, just going out for a walk, brisk as you like for about 20 mins, upping the speed if you can. All free. Redski is right, there is no way they would do the surgery if you were not up to it.

You will be done soon enough, and asleep the whole time to boot. A general anaesthetic is blooming marvellous. My gall bladder and wisdom teeth are a tad less long ((: and major, but it is bonkers because you go off in a flash and when you wake up you feel no time has passed, My husband wasn't bothered at all from pain, just woke up 'cluttered' with gadgets, which came away pretty quickly, his biggest complaint was slipping down the bed! and the ward being a' bit noisy' , moaning about 'trivia' is always a good sign.  And, es as Redski said, the physios will have you up and about the next day and by day 4 you'll be on the best , most tastiest grub..... and walking around the ward. Mine was chucked out on day 8 post op.
 

Keeping the faith y'all

Hilts

Hi Hilts

Thank you for that - I will try the stairs - you are all so encouraging - it's brilliant. I will beat it x