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 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.

Hi Hilts,

My husband had his last chemo yesterday! Nurse due anytime to remove the bottle then picc line out on Tuesday. We've been told scan in 6 weeks and Oncology consultant in 8 weeks. I just wondered if the oncology appointment is when they give you the final result of all the treatment? 

keeping the faith (you're catch phrase lol)

Milly

Hi Mille, 

yay- almost there . Done, finito, appointments down from almost daily , to almost never (:

Scanning post op/ treatment is an interesting one. They don't routinely do that here post op. Husband having one because of the coughing, but we got the 'end verdict' at the last appt with oncologist. As she had all the scanning that was done previous and the pathology from op  and said ',no active disease'

They said they don't scan routinely post op as it is all on symptoms. When we asked why-: here goes...

If any of the little ******* have managed to survive and 'floating'around they are unlikely to be able to see them on even PET as they are too small to,show/glow and also to small to cause symptoms,We asked , as you do, well what if they were not showing up pre op, but have now grow!! Not that I'm paranoid at all, she said 99.9% of the time anything that will show on PET with give symptoms..... of course we think, well what about the 0.1% then (:

Of course , now that he is going for CT, the unpragmatic part of my brain is thinking about that 0.1%!!, but as I said yesterday, he has had this cough since op, so must be related to the new plumbing..... who knows, 

So in short, you will get your final 'picture' with the oncologist, then probably discharged ( hand clapping emoji)- but not discharged from here my friend (: we still need you x

Kepping the faith

Hilts

Hi Mille, 

yay- almost there . Done, finito, appointments down from almost daily , to almost never (:

Scanning post op/ treatment is an interesting one. They don't routinely do that here post op. Husband having one because of the coughing, but we got the 'end verdict' at the last appt with oncologist. As she had all the scanning that was done previous and the pathology from op  and said ',no active disease'

They said they don't scan routinely post op as it is all on symptoms. When we asked why-: here goes...

If any of the little ******* have managed to survive and 'floating'around they are unlikely to be able to see them on even PET as they are too small to,show/glow and also to small to cause symptoms,We asked , as you do, well what if they were not showing up pre op, but have now grow!! Not that I'm paranoid at all, she said 99.9% of the time anything that will show on PET with give symptoms..... of course we think, well what about the 0.1% then (:

Of course , now that he is going for CT, the unpragmatic part of my brain is thinking about that 0.1%!!, but as I said yesterday, he has had this cough since op, so must be related to the new plumbing..... who knows, 

So in short, you will get your final 'picture' with the oncologist, then probably discharged ( hand clapping emoji)- but not discharged from here my friend (: we still need you x

Kepping the faith

Hilts

Hi Hilts and Millie 

So great to hear some patients getting to 'the end'.  Good luck with the scan Hilts. I am isolating this weekend then laparoscopy on Monday - biggie on 29th - terrified but you all give me hope and confidence - thank you xx

Andi xx

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