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 Leo,

Hope you soon recover from the chest infection soon.  We've been listening to our team play footie and after all the shinanigins announced yesterday a 2-1 win is a big relief!
 

We have seen Consultant Surgeon and Consultant Oncologist since last op and before post op chemo and those results were good. The aim of post op chemo was a 'belt and braces' approach- fingers crossed and everything else lol.

Keeping the faith

Milly

Hi Hilts and all,

It is interesting the subtle differences between trusts. It may be because of the complications after the initial surgery that a CT scan will take place. Really hoping Kev's left lung has fully expanded. Apparently a small pleural effusion was still there after the VATS thoroscopy and decortication. However he is still using the spirometer and can easily hit 4000 now so fingers crossed it's a good sign. 

Overall he is doing well, next few days will be tough but like Sally said heading for the finish line and hopefully we can get some normality back.

As you say your husband has had his cough a long time so odds are it's to do with new plumbing but I understand your mind racing. Hope you get an appointment soon and they can sort it.

Andi - all the best for your laparoscopy. My husband decided to sleep on his back for a week or so post laparoscopy op. The wedge pillow I mentioned may help you too. Quick delivery if you decide to get one.

Keeping the faith

Milly 

Ah - didn't realise the pillow was fit after laparoscopy - will send fir one tonight - thank you xx

Hey y'all, 

Andi47- looking at this with a bit of a tongue-in-cheek job. you'll know nothing about the laparoscopy as you will be nicely asleep. While I'm on that tranche same goes for the actual op. My husband woke up after the main event and was like "oh, I'm done then". Myself and Millie as onlookers had weed free gardens after (: However, being human we ALL love to overthink it and no doubt google it and come up with all the absolute worst scenarios (: like coming out with no legs or arms LOL. I had my gallbladder out by laparoscopy and it was honestly probably then easiest thing I've ever had done - no pain whatsoever, all I wanted when I woke was FOOOOOD(:

Millie- of course my mind is racing- why change a habit of a lifetime (: LOL. Ye, of course Kev had a lot of 'extras' in his portfolio, so scanning is pragmatic, even if the effusion is still there, then by god to be able to get up to that level,on the resistor is darn amazing, so obviously lungs working pretty darn good .

Leo- that's more like it (: I tend to loose my voice through shouting/ nagging at my 'charges' (: You sound generally 'run down' and need the rest, regardless if you'll become a 'full' member of this club or not(:

Add to that the racing brain,racing kids, work , life in general , were you forced to 'home educate' during the closures ? All  are truly exhausting mentally and physically. Your brain has been absolutely full to busting for the last 18 months , now this. Trust me- I more than 'get it' .Probably why I'm feeling so mentally crap at the mo.

As ever, this chat lightens my mood, kinda off loading in 'privacy' LOl

Keeping the faith- most of the time

Hilts

Laparascopic surgery is the dream!! My little boy had laparascopic surgery to fix a PDA in his heart in May, and typically Google was my closest confidante and worst enemy in the run up to it! I was awful, and him only a couple of weeks before his 3rd birthday was so chipper after like nothing had ever happened. Just "Muffwin pwease" when he came round. Completely unphased :grin:

Hahaha when does rest ever happen? Deliberately avoiding my emails because I know I'll have loads off the consultants as they don't understand the concept of working Monday to Friday. Monday morning will be fun :P 

In reality I'm curled up on the sofa sucking pieces of a bar of Cadburys since I can't properly swallow it with a hot chocolate and dreaming of a long hot bath later. And then getting excited about starting university in 2 weeks. Determined not to let anything stop me. 

Thankfully grandparents picked up the home schooling of the eldest, I was still working albeit from home for half the time (really not easy phoning patients when you've got 2 screaming kids in the background), so the ups and downs of this year or so haven't been as bad. Little boy is starting school a year late though due to his learning difficulties so he won't go into reception until he turns 5. Thankfully grandma is a special needs early years practitioner so he gets a lot of one on one with her. She's even built him a Sensory room.

Awwww no feeling mentally **** is not the best place to be though I totally get it. Always good to have somewhere to vent in private though! X

Hi Andi,

My husband used pillows after laparoscopy and said an elevated bed would have made it easier and it will help after the 'biggee' too. The surgeons are very skilled and the nurses and staff are brilliant . We are so lucky to have the NHS and dedicated staff.

keeping the faith

Milly

Couldn't agree more Milly - NHS are just amazing. I know I'm getting the best treatment available. Have ordered pillow xx

hi leo25daisy

you will find there is a wealth of knowledge and support scattered throughout the 40 odd pages on this forum , as you are at the start of your journey you might find it helpful to look into this archive , some of us have been posting for over a year and have covered everything from pre diagnosis to recovery bearing in mind none of the advice is clinical , everyone is  happy to share hints and tips however trivial  the problem might seem at the time ,  nothing is hidden on here you can tell it like it is , anyway just ask anything you like on here and we are all glad to help if we can , take it easy.

regards

Douglas

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

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

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