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

Thanks Andi,

I definitely want to stay in touch too! Happy to use this forum but wasn't sure whether to start a different one? I'm sorry to hear that you are struggling with your breathing Andi. I don't have any experience with Fresubin but someone on here may know about it. 

How wonderful to go back to ICU - my husband who was in ICU and HDU for a month has thought about asking to go back to see the staff.  He did write an e mail thanking all the consultants, ICU, HDU staff, nurses on the ward etc. I think he saw just about every consultant and surgeon! Very kind of you to offer to support others going through a similar experience with a tracheotomy. 

yes keeping the faith as always for everyone 

Milly