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 Ian, 

I don't usually post as much these days but I am taking some breaks from all the chaos here.

You won't be cancelling your holiday, you will be deferring  it (: . We had our  Florida hol booked 2 years ago, then that cold kicked off and diagnosis, so this years Florida job was kinda closing the circle.

Many on here did the same, DEFERRED. Some are MIA on here at the moment , because they are off warming the old bones (: or getting married - you know who you are (:.

As for not checking out now- nope you're NOT. This sort of thing does have a nasty knack of 'focusing' what awaits us all at some point ! BUT, you have some stuff to do in the next few decades eh. In a strange way, now that we are 2 years post diagnosis, the team are still all over him like a rash, so anything that does appear anywhere at anytime , even the little toe, they will be on it (:

Once your plan is in place- all the appoiments will calm down which will feel a bit weird.

this board has been my only source of info & calming measures since the start- can't take it away, but knowing you are not alone.

Right , off to ref the next kid punch up(: no more posts for at least a week

keep that faith

Hilts

Welcome Ian and hi to everyone on here,

I am one of the MIA members Hilts referred to in her last post. We have just returned from our European road trip which was originally planned for 2020.....

Anyway I'm pleased you've found us Ian. I like Hilts am the 'onlooker" and supporter. My husband aged 62 was diagnosed at the end of October 2020, lots of tests and told on 31st. December.that he was eligible for the operation.  Eight Weeks. of FLOT started end January and the Oesophagectomy was on 4th May 2021. The initial operation was "textbook" but complications followed a week later. I won't go into detail as it was extremely unusual. Anyway 2 further emergency  ops followed  all within 8 weeks. So last op 1st July 2021. He then started the post op FLOT at the beginning of August 2021! He managed to get through this and was told exactly a year to the date of diagnosis that he was 'visibly free" of cancer. Fingers crossed. 

As Hilts says the waiting is extremely difficult and once you have a plan it does help. I do however acknowledge everyone's situation is different and Google is definitely not the place to look. We all did it!

My advice would be to try to take each step at a time. I certainly crumbled at times and that is to be expected. This forum gave me hope at times when I felt there wasn't any. There are lots of different stories and outcomes on here including those who have defied the odds. My husband became critically ill but the NHS saved him and he did everything he could before and after the operation. Gaining weight  before the operation if possible is a good idea and getting as fit as possible. My husband joined an active recovery group via zoom and we did lots of walking (COVID was still a problem).

Any questions  just ask lots of people will help.

Andi  - great you made it to Turkey!

keeping the faith

Milly

Hi Milly 

So pleased your road trip was good - you give us all encouragement and I really thank you and everyone on here for that. 

I am still losing weight but feel it is plateauing now - I see my consultant, chemo nurse, dietitian, physio - and anyone else who wants to join - for a meeting on 9th   Last CT scan showed no visible cancer - yayyyy!!  Breathing still a bit difficult but can live with that. Getting my social life back at last. Just enjoying 'life'!!

Ian - keep keeping the faith - the NHS are miracle workers - it's a long and emotional journey - but there is always light 

Andi xx

Hi Andi,
 

Yes it was truly amazing to.do it, 2000 miles and four countries. We went up Aqilla du Midi in Chamonix  and saw climbers on Mont Blanc. 
This time last year I had broken my ankle, had an urgent appointment  for a suspicious mole and Kev was having his Picc line put in in prep for his post op chemo. Such a stressful time. My sister had to wheel me in for my hospital appointment but thankfully the mole  was fine.

I'm pleased to hear that you have a lot of input from health professionals to help with your recovery and absolutely delighted to hear that your last scan was ' visibly clear'. 
You have made huge progress after a very difficult post operative stay. In hospital. 

keeping the faith for everyone 

Milly

Hi

My dad had the operation last Wednesday and is due out tomorrow. I've bought some custard, ice cream and making some soups. He has been told get out and walk each day. Just wondering if anyone has some top tips. Like whats good to eat / avoid. He's also coming home with a feeding tube, a nurse has been to explain how this works and he has been shown how to use it, but does anyone have any do/donts that you don't learn from hospital? Any other wisdom from those that have been through this . 
 

Been reading through the conversation and although he's recovering well at the minute it sounds like it can be a very bumpy ride 
 

Many Thanks in advance. 
Sarah 

Hi Sarah,

My husband was in hospital for 5 weeks and as you may have read had several complications not from the actual operation but from a drain  being removed which resulted in internal bleeding and other complications then ensued. Consequently by the time he came home his diet was not as restricted and although the feeding Jeg tube was still in place it wasn't used. Everyone on here seems to have had different experiences but I know there are those who still had the feed put through the tube and came home in around 7 - 10 days who may help more with suggestions of food. High calorie is crucial I would say. I still put semi skimmed milk powder into full fat milk. Trifle and cream cakes, ice cream and anything he fancies is the main idea. He should have access to a dietitian who will give you a information sheet. Little and often is key but eventually he should be able to have a bit more each meal. I am amazed at what my husband can eat now. He had half his oesophagus removed and a third of his stomach. Others on here have had all their stomach removed. It's trial and error but soft foods are what they advise to start with but they do want you to get to a more 'normal' diet as soon as you are able to do so. 

Regarding walking every day again it's very individual. This operation is as big as they get so be led by your dad.,walking around the garden (if he has access to one) may be enough and certainly just getting home is huge. Normal daily routines can be exhausting so take it steady, small steps I think is crucial. I don't know your dads age or fitness pre op  so again it's very difficult to say. My husband has been part of an active recovery group since being diagnosed through the NHS which as been a real help. 

The good thing is even sitting outside will help your dad's recovery both mentally and physically. Your love and support will Play a huge role too. Look after yourself as well and access any help you can do including if necessary mental health as I know it's a very difficult diagnosis and operation to comprehend.

keeping the faith as always 

Milly

Hi milly

Not been on for a while but update on my son. Had 2 rounds of flot and latest scans showed metabolic remission apart from some sign on his lungs which they thought was inflammation.  Obviously best news we could have hoped for. However had a cough for a few weeks and breathing  ot good so a&e via ambulance whilst on holiday turned out to be pleural effusion, drained 1.5 litres but brown in colour and it has been sent off to see whether any cancer present or infection but worried sick. Finally getting to my question sorry, has anyone on here experienced pleural effusion and what could it mean. Sorry for rambling on

Hi meltra44

Regarding pleural effusion yes my husband had a large pleural effusion which they tried to drain several times. His was infected from pneumonia and developed into pleural enpyema. His fluid was continually checked for cancer cells. It's hard to comment or offer advice as each case is individual. The cancer team and upper GI team should support you through this difficult period until your son gets the results. Have they put him on antibiotics as a precaution? 

keeping the faith for your son and everyone 

Milly

Hi Milly

Yes he had an intravenous dose of antibiotics and they sent him home with some. I know it's hard to comment as everyone is different, just looking for some reassurance I suppose. Thank you for your advice just nice to discuss it instead of it going round and round in my head

Tracey x

Hi Tracy,

Yes I know that feeling and my default  setting was often the worst case scenario. However if it helps my husband recovered - he needed an operation to free his left lung. The old adage of one step at a time is true but easier said than done sometimes especially when waiting for results. It's 'limbo land'. Posting on here certainly helped me through some extremely difficult times. 
 

still keeping the faith

Milly

Hi Tracy,

Yes I know that feeling and my default  setting was often the worst case scenario. However if it helps my husband recovered - he needed an operation to free his left lung. The old adage of one step at a time is true but easier said than done sometimes especially when waiting for results. It's 'limbo land'. Posting on here certainly helped me through some extremely difficult times. 
 

still keeping the faith

Milly

Hi Milly

Yes - this site has really helped. I have yet another question. I have a hernia - caused by the massive surgery - and it is now pressing on my heart and lung, making me even more breathless.  I saw my consultant on Tuesday and he said it's major surgery to put right - and I'm not strong enough yet to take it. He wants to wait at least another 6 months - has anyone else been left with a hernia - I was told it's reasonably common??  I am OK - just a bit more breathless!!! Will it ever end!! 

keeping the faith 

Andi xx

Hi Milly,

Yes I keep jumping ahead instead of waiting for results and googling which I know you shouldn't. I'm going to try and take a step back and be there for my son when he needs me to be and try not to interfere, well not too much lol

Tracey x

Hi Andi,

Sorry to hear that you have a hernia. I think I recall someone else on here having a hernia if they see this they may be able help ? 

keeping the faith as always 

Milly

keeping t

Greeting to ya'll, 

We have returned from our Greek trip. It was much more relaxing than the Florida one ! Even thoug husband decided that he would cannon ball off boats AND climbed 100 stone steps in 95 deg heat ( the church in that mama mia film) I sat at the bottom and just enjoyed other peoples efforts (:

MIllie- that road trip sounds AMAZING , oh what a blast freedom to just goooo and stop wherever you want- you have now given us ideas (:

ANDI - The hernia would be US LOL. He has what is known in the trade as a 'para hattial henia. Translated- the bowel wandering into the chest cavity and it is massive, it is behind all his coughing and we discovered last week that because the hernia affects is swallow ( as it is so big) his food is not draining through the reformed pipe work as quickly as it should , so he 'aspirates' stomach ( what's left of it) content into his lungs and bingo chest infection. He has had 2 stretches, didn't work as didn't cure the hernia, he then went for a hernia repair, worked for a bit, but then started wandering again, so this time he is going for a barium swallow (mid sept) then the are going to do the nuclear hernia repair with a mesh to keep that darn bowel in place.

Apparently it is known 'complication' of Oesophagectomy and is an emerging compl. after gastric banding ( pretty much the same as oesophagectomy). It was and will be all keyhole, but an absolute pain in the backside never the less. At least the unwelcome guest has decided to stay away for now ( I always say that- not to tempt fate n'all). All his 'repairs' involved keyhole and overnight stay. Not as major as the original op ( doesn't get any bigger), but surgery none the less.

Metra- I think quite a few people have had plural effusions- nothing surprises me any more in this game. Chemo I think wins the 'side effects' award for the most. Usually antibiotics do the trick and the old drainage. But sounds like it's going in the right direction. But you are in the centre of the twighlight zone at the moment and it is one thing after another when all you really want is for it all to go away (:

Sa41- 3/4 of the way through then (clapping emoji's)- the first few weeks post op can be trying, BUT as you can see from us 'old timers' recovery does come, usually with a few bends in the road, eventually. No race, just plod on. I think my most enduring memory of that time is how subtle it is- you think ach, this is never gonna get better, only walking the length of the garden etc, but then one day, you go to the top of the road, a few weeks later, to the shop and then tah dah it just happens that one day you are jumping off boats in the agean! But as I know , you'll be wanting it to happen by next week- it won't , but it will eventually xxx

Well , I think I have rabbetted on enough- hope all the fellow travellers are plodding love and best wishes to you all

Keeping the faith ( most of the time)

Hilts.

Hi and welcome home Hilts!

Your husband is an inspiration! I couldn't cannon ball off a boat without going through this op never mind after it! Pleased that you've had a great holiday and walking up that Hill must have been hard work! All those 10 minutes running up the stairs paid off!

Yep road trip was fab and a great way to see different places. Air bnb's and hotels were good and our planning was pretty much perfect.  I was a bit worried before we went as we were on our own but Kev was determined to do it and we did! Standing on Anguilla du midi 3842 m up was amazing and seeing the climbers on Mont Blanc. Definitely recommend it if you are able to do it and the roads are much quieter.

I did think it was your hubby re hernia but didn't like to say in case I was wrong. I didn't realise that it was still causing problems as I  remember you mentioning he'd had a repair. It all makes sense though with the aspiration/infection and subsequent cough. As you say we always have our fingers crossed and dare not  tempt fate re the C word. We try  not to 'overthink' it and just get on with life and I must say we are so grateful to the NHS who saved his life 3 times! 

I think your husband is still the only patient to have had total keyhole surgery. Kev had open at the back, keyhole on his abdomen but when he developed internal bleeding they had to open up his abdomen as it was an emergency. Anyhow he is very good at putting e45 etc on all his many scars (10 drain holes as well) and they are fading. A small price for his life. 

keeping the faith for everyone as always

Milly
 

Hi Millie, 

You are sounding soooo good and positive- we are feeling the same right now, despite the problems,s. He is here, first success ,2nd success we are 'living' ( in the moment) as you by the sound of it, Do you know, I 'reflect' on all of it and think first up what choice did we have, there were no options apart from cracking on. Nobody wants such visitors.

The keyhole thing is quite rare I belive, but will be on the rise, I guess. Depends where the surgeon trained etc and who you got sent to when referred. I belive the Surgeon who did husband only ever does keyhole as it is his 'speciality' . Apparently though, because there is so much less muscle scarring inside, hernia's are becoming more common as scar tissue keeps everything more in check- or so I read. I really wouldn't have minded you saying it was us, we have all been through toooo much together to worry about that sort of thing and I have no problem with anyone on here sharing my  info/ tips/ blathering LOL

Overthinking is a particular human speciality recently. We certainly used to,and always think the worst and then worry about it ,  but since all the treatment  we have got a little better- no watching the news at all has helped,  as let's be honest it is daily Armageddon on there and as I say to husband- if they announce the 3 minute warning , what are we supposed to do- put the kettle on!! I guess that old adage 'what doesn't kill you makes you stronger' maybe slightly true after all. My worry level/ radar seems to have reduced significantly too- don't get me wrong I am still quite angry over the 'why us' stuff. But that will no doubt work through.

The boat and steps - oh ye- there was no way I was doing that and I have not had the stuff he has! I think you hit the nail on the head when you mention Kev was determined to do certain things- same as mine I reckon, after the coasters in Florida and boat cannon balling- it's like he's proving to himself that he's alive , kicking and recovered. He is also ( always has been) an adventurous swimmer - Xmas day and river , that sort of thing- so he has gone off with the kids to swim in the Thames- meanwhile I sit hear under the fan posting- my preferred option LOL.

Take care & keep keeping the faith

Hilts x

Hi Hilts, 

Yep I agree crack on - interesting re keyhole and hernias in general. Just to make you smile re swimming - guess where we went for the day on Thursday? Sutty aka Sutton on Sea! The sea was the warmest I can remember and I was there in 1976.but as a kid you don't bother about sea temperatures lol. We had a lovely day rounding off with fish n chips on the front. Last time we were there was September 2020 the month before Kev had his shocking diagnosis. It was our 38th wedding anniversary treat   (I was young lol). So special to go back nearly two years later thumbs up.

He's at the Footie match with our son Steve - Derby County now in league one but that's another story!

keeping the faith still

Milly

Awww, 

How lovely, what a great day out. I do like old Sutty and I like Maplethorpe as well. British traditional is the best. The North Sea is freezing, He does it though, I just watch (: . I grew up on the Bristol Channel- slightly warmer, but too right, when your a kid sea temperatures are irrelevant.

1976 (: I remember sibling baths and standpipes, they helpfully cut us off , but no national  'emergency' grrrr- just a hot glorious summer- I can almost even remember the smell of the rain when it came in September.

38 yrs eh- that is more than me at 21 - I was 'old' LOL. So cheers to you for that and plenty more fish and chips for us all.

Fondest wishes xxxx

Keep keeping the faith

Hilts x

Hi Hilts and everyone,

Just thought I'd check in to see how you're all doing?  Andi/Hilts and past posters, like you we are trying to move on and I'm aware new members of the club are at the beginning of this shocking diagnosis. I would like to stay in touch but I'm not sure if this is the right forum now. It's a year since Kev finished his post op FLOT and nearly 2 years since that dreadful night sitting waiting outside the hospital on my own in the car in the dark to be called in and told the dreadful news.  Maybe we could start another group to drop in from time to time?

I hope you are doing OK Andi as I know that you are awaiting an operation and Hilts your husband is too.

I still think of everyone I've 'met' on here and I know not everyone has had the same outcomes. I hope my  posts have helped those affected by this terrible disease along the way and given some useful advice and hope. 

still keeping the faith for everyone 

Milly

Aw Milly - you have been such a rock and would love you to stay in touch on here. You have certainly helped me   After doing quite well - I seem to be going backwards due to the hernia - breathing getting worse and they are trying to get me to agree to having oxygen but don't yet feel that it's necessary!!  Also losing weight and have just started on 2 teaspoons 3 times a day of Fresubin - anyone else had this??? Not agreeing with me at all but I'll persevere. Apart from that I'm still very positive - waiting for scan results. I asked if I could go back to ICU to see all the wonderful NHS.staff who got me this far - was very emotional as they don't usually see their 'end results' - was there for 8 weeks and they were exceptional.  I've agreed to go back to give encouragement to anyone in the future on a tracheotomy and feeling down 

Well - really hope you keep in touch Milly - we are a little family

Keeppng the faith for you all

Andi xxxx