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

Thank you - I will x

How is everyone getting on ?

Hope everyone is keeping on trucking forwards on their respective paths.

Hi Redski, thank you for asking.   Husband has just had his fourth and final round of post op chemo on Monday.   We were both incredibly relieved he managed to limp past the finishing line.   However he is pretty wiped out now with fatigue and chemo-ness.   Hopefully in a week or so he will start to pick up a bit, and then back to trying to eat proper food again.    I hope you are doing ok, and as you say, I also hope everyone is trucking along their paths.

Sally x

Hi y'all.

Hope everyone is good.

9 months today since the slice and dice was done (:

Y'all know mine has been coughing since birth, opps I meant op, must have been the 9 months LOL- and it is driving us both to distraction!! Well, rang our unit again to say arrgggg. She said ' oh I'll let the surgeon know" surgeon comes back- " well let's do CT Scan" To see what the trouble is !!!!! You can imagine what I'm thinking !! Last time we had those sort of words it went like " oh, we'll  just do an endoscopy to check everything is normal" . I am bricking it, I did ask them "are you looking for mets! , " not really they say, we are looking at the whole picture - arrrrgggg. Trigger or what.

On top of that we have now visited our local maggies. What an amazing outfit they are, defo be one of my charities for the future I think. We'll he went today and I go Monday. They have offered loads of 'psychological' stuff, but we got a fascinating article written by one ( can' remember name and to lazy to get of my butt and look). Harvey maybe?? Describing EXACTLY what is going on in our heads at the mo. So uncanny, I wonder if he has been in my head! Very much about the auto pilot, then wham, the massiveness ( queens English?) of the whole thing starts to hit home. At least I take heart from knowing for the first time in my life I am completely normal!! Still don't feel good though ):

Sally- yay- all done , finito. Yep, the hero in him will start creeping back little by little over the next few days, then weeks and before you know it, some type of normality- yay

Anyways

Onwards and keeping the faith

Hilts

Hi Hilts,   I hope the CT scan is ok, I can imagine how you are feeling, when is it?   I think my husband will be having a scan as well, different people say different things, so not sure, but I think it will be before the Oncologist call next month if he does have a scan.   It would be good wouldn't it if they could just see what might be causing the cough, it is a very difficult thing to live with, especially with people so wary of COVID coughing carriers.   Let alone the irritation of it.   And it is irritating for all parties.  We actually went to see a play a week ago, how exciting.   For some reason I started getting a tickle in my throat and was frantically trying to suppress a choking fit in the very quiet audience.  It was horrible and could have ruined our first night out for years!   It's not even me who is ill so what's that all about.

interesting you dropped into Maggies.   At his last chemo session I walked by the Maggie's centre near the hospital, I stood a while, but couldn't go in, I felt I would just start crying and not be able to say anything.   Or what even to say.   So I just ended up walking around the grounds.   I hope your session there helps you and brings you some comfort.

keeping the faith,

sallyX

Hi all,

My husband had his last FLOT today - hurray! Quickest one too finished at 14:10 although still has 5FU to go through til tomorrow. Sally - my husband asked about a CT scan and was advised it should be in 6 weeks and then 8 weeks until he seeing Oncology consultant. He has appointment with the surgeon on 6th October.  I hope your husband is beginning to feel a little better day by day. 
 

Hilts - yes I understand you must feel anxious and I agree with what Sally said about it being irritating. It seems a simple thing but when it's constant it must be difficult. Hopefully the scan will enable them to resolve the problem. Re the wedge for the bed lol - yes longest river in the world I believe by volume lol Pleased that Maggies were helpful and the article is by Dr Peter Harvey and the Clinicol Physcologist gave it Kev - very helpful and interesting . I definitely appreciate an explanation rather than a professional just listening although that in itself can be helpful too. 

I did think of something that might be help - Pomegranate juice or pomegranates are good for the platelet count. 

I hope everyone is going along OK on this difficult path. I appreciate everyone's situation is unique but I really do wish you all healing thoughts for body and mind.

keeping the faith

Milly

Thanx Sally, 

Ye,don't know yet, they'll send us an appointment, but the pragmatic side of my brain tells me that as he was coughing immediately post op, even during all the chemo , apart from when on dex- so looking like 'irritation' , he also finds it impossible to eat smaller meals and packs what is left of his stomach to the top grrr. Also if he was coughing straight from the op ,but not before then it has to be something to do with the op......., but my non pragmatic part tells me arrrg, it is obviously dodgy (:

As for coughing generally, drives me MAAAAD, 3am, the world is peaceful quiet, and then ...... arrggg.

i really feel your pain with your cough LOL, The more you try and stop it , the more it happens and now of course everyone glares, because of course every cough is Covid!
i have always been a Covid pragmatist. It is a viral infectious disease like any other. When I looked at what my what would be my 100  yr old (died 95- not Covid, had the temerity to be something else LOL)Nana lived through, she would find it incredible the reaction to the whole thing. When she was young, viruses like diphtheria, polio, smallpox,  measles etc etc were  ever present, before even starting on the bacterial stuff like TB, Scarlett fever etc, add to that the blitz, poverty, being one of 22 live births with only 8 living to adulthood, this would be for her a case of same old same old. Get on with it. Like my 80:yr old Dad said right at the start " if I can't live, what is the point of being here" , meaning he saw not point in locking himself up at his age.  Me- well I just wash my hands and crack on, like cancer , what else can we do.

As for being worried about crying the whole time in Maggies. That is what it is for and if it needs to flow, it needs to flow, let it go. It will out at some point- so get in there, you were very tempted, so clearly on your mind, and , I'll say it again- let it flow (:

And Millie yaaay- Kev is now done , finito, excellent news (hand clapping emojis ) I bet like us you cannot belive it! It is over. My god look at what we have all been through. Little by little, he too will get back to his old self- but as we still do ,cannot belive it was real. I have to,say though, now the emotional stuff is kicking in, but although I don't like it, I do feel it will be good for our souls, to not forget about it (how can you), but process it in positive way, file it if you like in the old hard drive (brain) and feel reasonably okay with it being there. The team have said the first year post treatment is the toughest in terms of emotional chickens coming in to roost, but I feel pretty well 'supported' and I am not scared about letting myself feel what I feel.

Now I'm feeling 'thirsty', now he is recovered, HE can get the kettle on.....

platers

Keeping the faith y'all

Hilts

Hi,

I just wanted to say I've been thinking of you and hope that your treatment plan is progressing. No need to reply unless you want to.

keeping the faith,

Milly

Yep Millie- to tabnabs, 

I've been thinking about you too and how I might respond,here I am moaning about feeling fed up, meanwhile.......hence why I have not responded sooner really, I still don't know what to say to you, other than thinking of you xx

Hilts

Hi everyone,

I haven't yet been diagnosed and am only 3 days into my 2 week wait for an Endoscopy for query oesophageal cancer. 

I've been having a read of your thread on my breaks at work today, and I have to say that while it's not put my mind at rest at least I know if worst comes to worst I won't be alone. 

Currently experiencing dysphagia for all solids and swallowing fluids is painful, (though I think this is exacerbated by the chest infection I've got on top of everything else). I have confirmed thickening of the walls of oesophagus which was coincidentally picked up on a contrast CT where they were looking for something else, and my GP did not reassure me when he goes we find this in 35% of chest CT scans and in 50% of cases it's cancer. I've also lost a lot of weight in the last 2 weeks, dropping from 10 stone 6 to 9 stone 2 but I'm sure this is in part to the dysphagia as I'm definitely eating less.

I know statistically I should be in the "safe" half of the population as a 29 year old female who's not smoked in 10 years and rarely drinks, but you never know who this is going to hit do you? 

Hope you don't mind me gatecrashing, just not had much if any support from the family. When I told my mother her response was just it won't be cancer people your age don't get that. Obviously I have to say I'm hoping it's not, and that maybe the heartburn that started at the same time as the dysphagia has just caused scarring in the oesophagus instead, but would be nice to have some support on my journey from those who have been there and understand. 

Hi everyone,

I haven't yet been diagnosed and am only 3 days into my 2 week wait for an Endoscopy for query oesophageal cancer. 

I've been having a read of your thread on my breaks at work today, and I have to say that while it's not put my mind at rest at least I know if worst comes to worst I won't be alone. 

Currently experiencing dysphagia for all solids and swallowing fluids is painful, (though I think this is exacerbated by the chest infection I've got on top of everything else). I have confirmed thickening of the walls of oesophagus which was coincidentally picked up on a contrast CT where they were looking for something else, and my GP did not reassure me when he goes we find this in 35% of chest CT scans and in 50% of cases it's cancer. I've also lost a lot of weight in the last 2 weeks, dropping from 10 stone 6 to 9 stone 2 but I'm sure this is in part to the dysphagia as I'm definitely eating less.

I know statistically I should be in the "safe" half of the population as a 29 year old female who's not smoked in 10 years and rarely drinks, but you never know who this is going to hit do you? 

Hope you don't mind me gatecrashing, just not had much if any support from the family. When I told my mother her response was just it won't be cancer people your age don't get that. Obviously I have to say I'm hoping it's not, and that maybe the heartburn that started at the same time as the dysphagia has just caused scarring in the oesophagus instead, but would be nice to have some support on my journey from those who have been there and understand. 

Howdee Leo, 

Never worry about 'gatecrashing' - you're not, this is a public board and everybody and anybody is welcome to join us. Welcome.

Bless you, you sound like me in the first throws of investigations! Reading EVERYTHING I could find on 'it' the more gory the better! LOL. Google is an absolute horror show.

What can I say to you. The worry is horrendous. IThe longest 2 weeks of your life!. Horrible.

If it turns out to be nothing then great, if it turns out to be 'something' then you've found us !

i am not the victim, it's was my 56 yr old husband, I say 'was' , not because he's popped,off, but because he is at this moment in time disease free after 9 months of treatment. Same as many on here , but by no means all.

People, like friends or relatives the try to be helpful, bless 'em, but by god they can say the most crackingly  helpful comment......not.,Even GP's  bless em.

I wouldn't beat yourself up about, "did I do this or that" , nobody has ever really done anything, it just is.

Most on here know that I am a great advocate of the ' Keith Richards health promotion plan' ( look him up on google ) he has done EVERYTHING they say you shouldn't and is still here knocking on for 80!. I always think luck of the draw rather than anything else.

Anyway finger x for you and come back to us either way

best wishes and keep the faith

Hilts

Thank you .

I know I've been added to the Endoscopy waiting list (perks of my old boss now being the team leader in the cancer bureau at the hospital where we both work), and she's told me my referral has been triaged as a 2 week wait 1b urgent. No idea what the 1b means, but at least I know I'm on the list. Nerve wracking waiting for the call though. 

I've been checking my phone every 5 minutes at work just in case I've missed the call. All I really know so far is that when I had my CT done I saw a registrar rather than a consultant and he just goes your lungs are clear but the CT has thrown up that you have significant cell changes in your oesophagus and then sent me home! Not the most reassuring thing in the world.

At least my GP has shed some more light by saying that it's wall thickening at some gastro junction? even if he then did have to throw the 50/50 statistic my way.

It's really heart warming to see how much they can do now because I saw some figure when I first jumped on Google about a 15 percent survival rate at 5 years and that terrified the living daylights out of me when I've got young children. 

Hi again Leo, 

Now, I like to think of myself as having a bit of a crystal ball in front of me. Would you be sat there with your phone/ pc, jumping on every notification, searching google, just to confirm your worst possible fears??? Don't worry I don't and can't see into your soul, but I SO KNOW what you are feeling right now. You just want it sorted.

Google and survival stats are absolutely appalling LOL- BUT what is hidden in the 'small print', is that those stats are pretty old, I think up to about 2010. Treatment for this has moved on massively. As has diagnosis. I am an ex nurse, left the wards in about 1990 and remember the whole treatment for this was , well grim. Don't get me wrong, it is not great fun now, but it is certainly a  huge amount better than I was expecting.

BUT , you are not in the club ( oesophageal club) yet. You don't know which is truly a horrible time.

As for young kids, yep we have too, not that young , tweens,. My guy  was discharged from hospital xmas eve, best xmas pressie ever, the kids are 'suspicious' about Santa, but xmas for them is still all sparkles and magic, so worked out okay. Whatever this throws at you you WILL get through it and so will your kids.

If you flick back to the start of this thread, you'll see many of us have had the 'doom and disaster' medics experience (:. I can only say that it must be because they do it all,day, every day, forgetting ( not deliberately or intentionally) that we are only planning on hearing such stuff once, even that is frankly too much.LOL

As I have always said on here and truly belive, distraction is the only way to get yourself through this time, whatever it maybe, it doesn't make the problem go away, but it help just to disengage for 5 mins.

so, I'm off to bed now, bush wacked- kids don't half drain the batteries and along with coughing bob, maybe I should to a 'health spa' for a week- preferably run by Keith Richards !

take care! Keep the faith and do let us know either way

Hilts

Morning all from the Island of festivals and rampant covid cases (post weekend ) Before anyone asks, no, luckily can't hear anything from my house, despite the Island being the size of a postage stamp! Besides Tom Jones and Duran Duran really aren't my bag, no if the Stones were playing, that's a different matter, but I doubt if I'd ever see them again now that Charlie's gone.

Getting back into the chemo routine, bloods at home on a Monday, treatment on mainland Wednesday then disconnection at home on a Friday, trying to sort out treatment at home as well, I find getting the ferry afterwards quite draining. Don't they have a hospital on the Island I hear you ask, well, yes they do, but as Matron Nightingale is still in charge, I say no more. Besides I get major PTSD going there (long story!)

Decided to get my hair cut in preparation for losing it, couldn't face the cold cap again, unfortunately my hairdresser took the 'short, choppy' look too far, I now have a skinhead! I admit to owning a pair of rather natty pair of DMs but really didn't want to look like a reject from Sham69, besides my boobs are much too big for braces these days! 
In true Tabnabs style I have gone against the textbook, or off Piste, a phrase the Medical profession like to use when referring to me!  So in theory any pain I should have ought to be from the Metz in my liver and gallbladder but no! It's all down my left side, leaving the nurses somewhat bewildered, anyway got sorted with some oromorph, so onwards and upwards.

sending healing hugs and positivity to all the gang

Hi Tabnabs,

Good to hear from you. You sound like you have a plan, not easy when you have other problems pop up but if the professionals know they can help so hoping the oromorph works. You are and have been an anomaly for good reasons too and have beaten the odds before. 

Your post made me laugh picturing you in doc martins and braces - and why not? Rolling Stones weren't my thing particularly but saw them at St James Park in 1981 and wow! Appreciated them more as I've got older. 
 

Healing hugs back and keeping the faith,

Milly 
 

Hi Leo,

Welcome. We all understand the difficulty of waiting for results. What I would say is you have done something about the situation which is crucial. Distraction helps. I too looked at Google etc and wept, I was totally overwhelmed. A lot is out of date and doesn't take into account the individual's age, health etc 

My advice would be try not to look as you don't know the result yet. Easier said than done I know.

My husband is the patient and has had chemo op and finished his last post op chemo cocktail yesterday. There are good outcomes.

keeping the faith 

Milly

LOL Tabnabs- keeping the faith I see (:

yep 'regional centres' take on a whole new meaning when you live on an island(:. and the ferry, as lovely as it is what an added hassle. As for 'matron nightingale' LOL , more than know the type, Hattie Jaques, and Charles Hawtry as the manager would probably do a better job(:

yeee , the stones , I'd be there like a shot, but rewind to say 69 ish. As you all know I am 'in love' with the   Ledge nd that is Keith Richards, what a guy (((::

As for the braces , get 'em on. My tween eldest has just got into DM's, no idea how ! Bought her first pair of proper lace ups boots for school- wow the price! Never paid that much for school shoes before!, my 3 pairs of different length legs are of course totally different!. As are husbands 4 pairs of boots, shoes etc.....have told her that her feet need to be bound and boots need to last until at least 16 yrs. (((:::

if you don't fancy braces and boots you could always get yourself a CRombie and  pork pie hat, for the cold .... like .   
Keep the faith, we are with you

Hilts.

Well I've had a quiet day on sofa watching Downton Abbey.

Feel like I can relax a little more over the weekend as I know I won't hear anything now until Monday at the earliest.

Completely lost my voice thanks to this chest infection so having fun miming things over to the family. However very grateful that I got my first full night's sleep in a week so its the small things making me happy. 

8 weeks sounds like a long time to see the consultant again though even though I know most Post op follow ups are 6-8 weeks. Guess being in the club teaches you patience 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 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