Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Hi Hilts

i'm waiting for appointment for lung exercises - can't use the expander contraption as have damaged trachea!!  Definitely getting better though and staying very positive, the lovely sunshine helps. 
 

Glad your results are good - always a bonus. I had to sell my soft top car as needed an automatic - arm (broke it last year) wasn't strong enough to get reverse!!  Still have roof that opens - but really miss my soft top 

keep getting stronger 

Andi xx

We are both crying with laughter, i as per usual type and send without checking, I was thinking Tripe?? Re read my post and see that I didn't finish the word!! Triple cheeseburger as in McDonald's lol, that has really made my day, I'm such a twxt sometimes xx

LOL, now you've got me laughing my face off (: (: 

That is a huge improvement!! Tripe v triple cheeseburger , no contest. I am a Burger King gal, but when you've not been able to swallow anything and taste nothing but metal a cheeseburger does the trick.

Get chucking any weight on now, eat anything and everything. Chemo is the dogs nads for doing what it does, but boy does it make you feel sick- so go and have a 'daily Mac.

Keep smiling and the faith 

hilts

Hi again everyone, sorry I've been silewnt for a while but one way or another, we've been very busy, too and from hospital etc.

A lot has happened in the meantime and I would change my userename from Distraught to cautiously optimistic if I knew how!!

Bottom line is hubby had FLOT cycles which were very successful and side effects he coped well with were quite limited until the 4th, which knocked him sideways.  Neveertheless, the end result was brilliant in as much as he was eating normally after cycle 2, gaining weight massively and the laparoscopy following cycle 4 showed no cancer cells, even micro cells, as a result of which he had the BIG OP last Thursday  -  he's currently on Critical Care, having had wonderful care from the NHS which cannot be faulted.

Slight problem in as much as he's developed a clot on one lung, hence a longer CCU stay than was anticipated, but the surgery went as planned and he's recovering well other than the clot on the lung, which is beinbg treated and improving as I write this.

I am so thankful to the NHS.  It is very easy to complain and find fault but few mention when they have had good service and boy, has he had good service.  The people dealing with my OH have been brillliant, devoted, clever and dedicated to their jobs  I don't think he would have had better treatment had he paid for private care.

When I first posted on here I truly felt as if my world had fallen apart.  That was last November and I wsould never have believed what has happened since was possible.

Onwards now.  Probably another 14 days in hospital, recovery at home and another 4 cycles of chemo to give him the best shot of long term recovery. 

Thanks to all of you on here who lifted my spirits along the journey so far and provided me with all the helpful info I needed.  The biggest thank you goes to our wonderful NHS.  .  

Hi Distraught

So good to hear that your hubbie's treatment is doing so well. I can only agree wholeheartedly about our truly wonderful NHS - I had 8 weeks on ICU - on a tracheotomy - OK not what I had expected, but the care was second to none.  The nurses, doctors, cleaners - all so dedicated. NO amount of money could have bought me better treatment. They are just wonderful and we are so lucky to have the NHS.

Hope everything goes well and your hubby is soon home with you again 

Andi xx

Hey y'all, 

Cautiously optimistic ( formally known as distraught' - lol)- so glad for you, 3/4 of the way through now yaaaayyy.

ICU is the route for all, most  collect a few 'extra's' on the way. Considering the massivenesses?? ( queen's English?) of the op to be expected I guess.

Really good news about those cells, had a right good slapping and murdered in their masses ( big clapping emoji) . The chemo is the business, but by the 4 th the ole' bod is thinking enough! It does its job very well, but side effects are pretty cumalitive.

They will soon have him up and eating the 'delicious' minced and moist- what a treat.........not(: home before you know it.

I absolutely agree with you about the nhs, people dis it all the time, particularly our revolting media and revolting politicians stirring the pot trying to make themselves more 'popular' The talent, care and dedication is incredible . When we were about to go through surgery I had a little bee in my bonnet that had to be chased - about what the whole thing would have cost If it wasn't for the nhs- worked out about £800,000!!!!!!- no wonder the survival stats are bad in countries where they have to pay for it!, simple . If you can't afford it , well, put bluntly , die ):. We literally don't know we are born.

Anyhows , of to sit in sun

Keep keeping that faith

Hilts x

Hi again everybody

Firstly I must learn how to rid myself of the Distraught title and will be asking my youngest for help on that score.

Good news is hubby is recovering very well.  All the medics are pleased with his progress, the clot in the lung hs been "busted" with the relevant drugs, he is now tube and wireless, apart from the feeding line into the stomach,and has been drinking sips of water for the last 3 days.  All the tests show he is, so far, leak free and so today he started on the sloppy food diet.  He's so looking forward to jelly and ice cream!

There is talk of sending him home earlier than anticipated, maybe this Saturday.  Is this normal?  How long was everyone else in hospital?  Is help available via the District Nurses etc. with changing dressings and follow up stuff?  

I am assuming he will have to  have the follow up 4 FLOT cycles.  If so, when is that likely to start?  Is is automatic that this is offered and if it's a matter of choice, what would your advfice be?   

Signing off as Cautiously Optimistic.  OMG just noticed it's snowing

Hi Cautiously Optimistic !

Good to hear your Hubby is doing well and moving nicely out the other side of the op, well done !

My surgeon didn't allow anything by mouth for 5 days post op and I just remember dreaming about glasses of ice cold cola in my sleep as I'd had enough of sucking on wet sponges on sticks to quench my thirst !

When day 6 rolled around and I was allowed ice cream I remember being on FaceTime to my Wife as it arrived and breaking down in tears on the phone to her as it tasted so amazing to finally be able to eat something, after so long - it was amazing yet something I'd taken for granted all my life. Those 5 days post op made me think and appreciate a lot of things !

I was in hospital just shy of 10 days I think, and remember that they wouldn't discharge me until I'd had a bowl movement - and I was desperate to get home to see my Wife and kids (it was mid 2021 and covid restrictions meant no visitors @ hospital) and being clogged up from all the pain killers was preventing me getting home any quicker haha !

My Wife changed all my dressing and they were pretty gruesome to start with - she was a trooper as I looked like an extra from the beach landing scene at the start of Saving Private Ryan to start with ... and remember her calling the MacMillan Helpline a few times as the dressings were so bad - but she trooped on through and here we are 7+ months later with a beautifully healed scar !

I had the follow up FLOT and it was about 4-6 weeks post surgery and was the absolute, without doubt the hardest thing I have ever been through in my entire life. It made the pre op stuff and the op itself seem like a walk in the park. It absolutely kicked my derriere with nausea, vomiting, feeling toxic in my own skin ... it felt like I had been part of the Salisbury, novichok Russian poisoning.

I remember saying to my Wife after the first post op cycle, I don't know how I can do another 3 of these. But through her support and encouragement and all the people in this thread too, I limped on through and made it out the other side thankfully !

My advice would be, it's blooming tough so manage your expectations and support your hubby through it if he chooses to do it, but id take whatever they offer to minimise any chances of having to go through it all again.

Encourage him that life can be good again the other side of it all. Last Saturday night my Wife and I went on our first date night, no kids for in as long as I can remember. Lovely restaurant and I managed to eat a filet steak, chips with peppercorn sauce and a cream filled meringue with fruit coulis for dessert and two mojitos ! Not bad for someone that's had a total gastrectomy.

Yah, crazy here in Surrey too ... snow this morning and now blue skies and sunshine this arvo !

Hilts, I had a scan yesterday morning too and saw my surgeon in the afternoon and happy to hear that no dodgy cells present currently either !

Endoscopy in a few weeks time so he can check out his handiwork by the sounds of it too.

Thanks everyone for the encouragement here and support, hope you're all OK and trucking on thru our respective journeys.

Ello Cautiously optimistic and y 'all,

Yep, got caught in a right 'blizzard' this afternoon!! They weird thing being I was looking at the forecast for Florida- where we are finally off to next week- 80deg V 32 deg. 
 In terms of your husband coming home and dressing etc. mine was chucked out day 8 or 9 BUT it was Xmas eve and he had it all by keyhole, so he had no dressings either, just 4 bullet hole wounds., which were 'glued' not stitched and were all nice and dry.He had a very small dressing over his abdominal feeding tube.  His chest drain hole had a tiny piece of gauze over it. But by day 4 it had scabbed nicely, so I took it off, It really does depend on what the wounds look like, they may not need dressing at all, especially I'd they are 'nice and crusty' . If he does have any dressing, they will be very simple, just pull the old off and stick on new, bathing wounds etc stopped donkeys years ago. I am an ex nurse ( left wards 1990 ish) and we were moving then to leaving wounds alone, not dressing them every day unless there was good reason and never bathing them, theory being less fiddling, sooner mended. Unlikely to need district nurses as unlikely to be anything complicated if at all. If I think back to my c section wound, I had no dressing at all after about 3 days.

As for the post op chemo, as Redski says about 6 ish weeks. and yes, husband found it all pretty grim, as all the effects are cumulative, so the body really is well miffed by this point, BUT most on here have muddled through the glue and come out the other side and worth that extra 'pain' for the gain. Just think though 8 weeks and that's it, done, finito. Rollercoaster car back at base .

You will certainly get there and no doubt will sit down, look at each other and think WTF just happened! If it's any consolation we still are doing that!
keep keeping that faith

Hilts 

Hello everyone,

Sorry but this isn't an exact response but not long out of hospital after surgery. Added complications with lungs collapsing and constantly wretching and coughing up phlegm every day, episodes last from 30 minutes to 2 hours last night. I've only

managed one meal in nearly 3 days and just can't stomach anything. Did or has this happened to anyone else? Does it take long to get better?

the added issue of low SATs and inability to walk for, finding things tough and may have lost my GF over this as I have some bad days. 
 

Just didn't know where else to turn too,

It's given me some strength to see those who have been through similar.

Brotherhood

Hello everyone,

Sorry but this isn't an exact response but not long out of hospital after surgery. Added complications with lungs collapsing and constantly wretching and coughing up phlegm every day, episodes last from 30 minutes to 2 hours last night. I've only

managed one meal in nearly 3 days and just can't stomach anything. Did or has this happened to anyone else? Does it take long to get better?

the added issue of low SATs and inability to walk for, finding things tough and may have lost my GF over this as I have some bad days. 
 

Just didn't know where else to turn too,

It's given me some strength to see those who have been through similar.

Brotherhood

Hi Brotherhood

Ibhad the same - and honestly - one day you go to bed and suddenly realise 'I haven't coughed or been sick today'. It may come back occasionally but it gets less frequent

Keep with it 

Andi xx

Hi

just wondering if anyone has any experience of a persistent cough post surgery.

my Husband is now 8 weeks post surgery. Doing well really, but has developed 3 weeks ago a persistent cough, very annoying.

anyone else had this?

tracy

Glad to hear you're doing OK Andi !

Hi Tracy, [@Hilts]‍ is our resident expert on this !

Her Hubby had a mystery persistent cough post surgery and investigations etc to get it sorted so I've no doubt she will have bags of advice and knowledge on it to share with you !

Thank you Redski - it a long and slow process - but getting there. Hope you are OK x

Thank you Andi,

It is early days, I hope I get to that stage sooner rather than later. 
 

Anyone have any tips for mental health while I cannot walk more than 10 yards without being sick? At 30 it's really playing on my mind that I can't do anything anymore really, not to sound ungrateful to be alive folks sorry. 
 

Brotherhood

Yes, just focus on and remember that your current situation is not your forever situation fella.

Like Andi says, one day you'll realise how much progress you've made without knowing and feeling it until that time.

Rest and sleep is such a good healer too, don't push yourself too hard, rest a lot - it really helps.

I suffered after my op with foamy phlegm coming back up too but it's gone now and passes - you will get there, just keep walking forwards through your journey and stay positive !

Youre post op with all your bad cells removed in surgery, you've much to be grateful for, even if you are feeling a bit battered, bruised and through the mill currently !

Hi Tracy

nearly everyone on here has had the cough , regular sinus rinse with saline solution has done the trick for me , you can buy a kit it at your chemists.

Regards 

Douglas

Wow y'all quiet for weeks then a flurry - yay.

We have a new member I see Brotherhood- welcome to the oesophageal cancer club - the club no one wants to be a member of, but here we all are (:

I have to say none of us have ever met, and none of us are medics- just experts in the lived experience and living the dream ! on the fastest rollercoaster in town I feel are very close bond with all us strangers on here, as we all 'get it' enough cheese (:

I am afraid brotherhood, that you are completely common (: - what you describe is how it is post op- pretty sheeeeite, BUT, slowly bit by bit you creep back up. Looking back I would say my husband took about 4 weeks to get on anything remotely solid, he had no appetite and those 'delicious' over night feeds were RANK, but day by day it does get better he went for his first outdoor walk, only to the top of the road and back about 8 weeks post op, then creep creep, little by little better and better, but it sure ain't a quick recovery. As for your SATS etc, yep, your lung was deflated! and it really won't be happy about that at all! Most on here have collected some post op extras, it is a maahoosive op, about as big as it gets- mine was short of breath, rubbish SATS etc for about 10 weeks, then guess what, little by little, day by day bingo. You WILL get there, keep sipping fluid and your feeds going on, then just pick at stuff, literally anything you fancy, the wired thing being the more you eat the better your appetite- go figure, but you are very early days, and it is a bit of a twighlight zone, but give yourself another 6 weeks of day time TV- and you'll be legging it to the bottom of the garden and back with relish x

NOW , who mentioned COUGHING !!! Yes, we are the experts in that department- look back at my posts they are EXTENSIVE LOL . We know it is nothing 'dodgy', but it is still driving us nuts , none the less (:Husband has had 2 scar tissue stretches and a hernia repair, which slightly helped , but still coughing he is, although I have to say , it has improved slightly and has better days, the surgeon next plan is to go for a barium swallow to see where the any food and fluid is going ( green face emoji). They are fairly positive it is down to irritation and likely to be something coming back up what remains of his stomach/oesophagus. BUT, my husband is not the best at doing what he is told, so when they said food needs to be 'little and often' I think he turned deaf, because he eats as he always has done grrrrrr, which I think is what makes his guts full and bubbling back- although , when he downs several pints it is much better!!! Funny that! , but I guess all that fluid is washing he guts out, so no food overload left to irritate. He has behaved himself better this week, grazing throughout the day and guess what?? Much improved, maybe, by some miracle the message might be sinking in.

Take care y'all and keep keeping that faith- although tough sometimes

Hilts x

Thankyou for the responses folks really appreciate it,

I'm just hoping this constant vomit and wretching doesn't cause any issues inside as the last place I want to be is back in hospital. 
 

Great community to find,
 

 Brotherhood