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

Hiya Douglas

Much appreciated :-) these are literally the two longest weeks of my life, hoping the waiting list officer for Endoscopy can give me a date tomorrow as at least I'll know what's happening then.

I know we've lost a lot of our theatres at work at the moment due to a rise in covid cases, so not sure if that'll have any effect on when my dates going to come through.

Slept 17 hours last night and still feeling exhausted now, considering as my coughs getting worse maybe taking tomorrow off work and booking  a pcr test just to be doubly sure it's not covid related. It would be just my level of luck that I've thought this was a chest infection due to negative Lateral flows for it to be covid instead 

HI again Lo25 daisy 

Sorry to hear about your delayed endoscopy which is the crucial first element in diagnosis as a procedure it is not stressful at all , when i got mine in January 2020 i watched the whole thing and actually looked at the source of my problem , fingers crossed at your age you have a different ptoblem i had suffered from swallowing disorders from my early 20's which were not cancer related so here's hoping you are the same , otherwise once the NHS machine kicks into action it's a real whirlwind affair and before you know it your where i am today 20 months down the line hopefully cured  and left wondering what all the fuss was about , you take care now , any questions just ask 

Regards

Douglas

Well some good news at least. After me chasing the Endoscopy department (the waiting list officer for 2 week waits is on annual leave til the 28th), they've booked me in for an Endoscopy on Sunday morning. I'll be isolating from Friday evening as soon as I finish my shift and have a PCR done. 

I understand if they need to take biopsies they do this at the same time? 

Hi Leo25Daisy,

My husband had biopsies taken at the same time. He did say he wished he'd had the sedative for the procedure. He did do during the second ultrasound endoscopy. It's a straightforward procedure but he felt more comfortable with the sedative.

Hope this helps.

keeping the faith

Milly 

How long does it normally take for biopsy results to come back? I'm definitely taking whatever sedation is on offer, if I remember rightly the lady on the phone earlier said it was IV sedation.

The swallowing is definitely bad at the moment, it took 6 attempts to get a small fork full of noodles down at lunch! The girls at work are trying to make a joke of it going think of the weight loss. 

Admittedly I did manage to fit into a pair of size 6 Work trousers today (haven't managed that since pre pandemic times) and I was a 12-14 before this began. 

Keeping the faith

Chrissy

Hi Again  Leo25daisy

thats good news , i never take the sedative for the endoscopy as you get home quicker afterwards , as for the biopsy its such a small sample they are taking you don't feel it , i suppose it all depends on the person , i am asthmatic but was relaxed and managed without the sedative which allowed me to focus on what the consultant was doing and to watch the procedure on the monitor , the consultant then explained to me what we had seen , as they have done tens of thousands of these procedures they can usually give you a fairly accurate opinion on the day in my case it was a tumour , this was confirmed officially via my GP a few days later , after that all your other scans are external so don't get to worried and good luck for Sunday , we are all hoping for good news from you , take it easy.

Regards 

Douglas

, 

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

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