Hey. Cautiously optimistic xx, 

GOOD NEWS. Got through it.

So he's now on the upward 'stroll'. Yaaayyy.

Incredible stuff when you think about it. Our story read pretty much like yours, my initial post were virtually the same as yours, then they evolve as we get more experienced riding the rollercoaster.

My husbands 2 nd chemo was also the biggy. All symptoms virtually gone- like there was nothing going on?

We are now coming up to 2 years post e day( endoscopy day) official mdt diagnosis on 8th August. 16 months since end of treatment.

Mine had a pesky cough for a long time, so scanned,stretched and scoped, but turned out to be a plain old chest infection, caused by 'overspill' when he eats to much!!! Mmmmmm - he knows what he is supposed to do, but honestly trying telling him that grrrrr. (:

As I said to the Surgeon " I am so glad you saved him, so I can now kill him myself " (:(:

We are off on holiday ( again) in 2 weeks, a relaxing one hopefully after the nutty Florida escapade 2 months ago.

I suppose I would go as far as to say (for now, not to tempt fate) Life is good.

Keep keeping that faith y'all

Hilts

I've been a lurker for a few months now,, trying to gain information on this horrible disease. My partner was diagnosed with this in March 2021, we were originally told he could have the operation, but it was decided that he wasn't fit enough. He began chemo in June, finished in October, then had 10 days of radiotherapy in January. During all this his weight has fallen drastically, he went from over.12stone to just over 6stone. Last week he was told that his haemoglobin was low and he needed a blood transfusion. Today, he had an endoscopy as they think his tumour is leaking? I've tried to look for information on how bad this is, but can't find anything? I wondered if anyone on here knew anything about it?

Trying hard to keep the faith.

Emsnan

Hello Emsnan and welcome to the club no one wants to be in eh.

As you probably noticed we are far more common than we think we are (:

As you'll know from lurking (: there are many of us sharing the highs and LOWs of our rollercoaster rides . I hate journey- such a cheesy word (:

Anyhows- yep the wonderful disease and what a cracker it is. Mine is now 16 months post everything and has yet another chest infection. Essentially- he stuffs to much then aspirates and bingo cough ,chest infection- some people just don't behave,

The potentially leaky tumour- no a clue on that one. You'll need to speak to your MDT. My husbands was an adeno, so a solid mass, nothing to leak apart from vessels bleeding, they did after the last chemo- but no bother for us as we knew the cell were pee'd off (: I guess you need to know what is leaking.

As for the op and not being match fit. A few on here have been like it. The surgeons are really really hot on everything being tiptop as it is such a major procedure. A few have gone the palliative route- before you gasp, that means managment/treatment of a chronic condition- not checkout time (: . One stoic chap is 10 ish years into his palliative and another is not longer palliative, but showing no active disease!
Be in no doubt though chemo is foul- does the job it is designed to do, but oh boy. I think every condition under the sun is a side effect (:, that is why his shot heamoglobin doesn't surprise me in the least, so get the blood in.

Now weight loss, that is something I know about! Mine lost about 4 stone, all on here have lost to varying degrees. Does your guy eat, or is he tube fed in some way? Mine has had both overtime. If he is unable to eat, have your team offered one? My husband hated it, but it took the pressure of eating for a while, especially during chemo when you feel as sick as a dog and NO appetite. It stopped more weight loss and even though they are pretty disgusting in terms of 'flavours' it did stop the massive loss and kept fluids going in and in a strange was probably encouraged his oral intake. Something to discuss at least ?
if he is taking stuff orally, then the highest calorie/ fat stuff you can find- might a trifle go down! Vast quantities of ice cream.?. Dietician?

Not sure if I've answered what you want, but please do ask away.

you have already learned the sign off

Keep that faith

Hilts 

Hi Emsnan

sorry to hear your news but as Hilts says - the NHS are amazing  - chemo is horrendous.  I am 9 months post op but had 10 weeks in hospital - 8 with a tracheotomy - but I have just returned from a holiday in Turkey and 2 weeks in Scotland - never thought it would be possible!!  I get very breathless but that's due to lung damage - not the big C!!

I still find eating a problem as I don't get hungry and am too busy now to fit in 6 small meals - my fault - still losing weight - 3 stone so far and may have to have tube in again (yuk). But I'm here, happy and pain free - what more could I ask 

Good luck and keep keeping the faith

Andi xx

I love your spirit Andy keep the fight ! My partner isn't doing so well he's got the tube chemo not working tumour is growing he's got to have 10 blasts of radiotherapy to help him let's hope it slows the tumour down . 
Take care xx 

So sorry Rusty - I'm sure it will work xx

Whe hey Andi!!
YOU DID IT

Soooo glad you went away for a MONTH and warmed ye 'old bones . I am sooo pleased for you. Genuinely.

I feel a bit 'bad' for being so upbeat, when it is not like that for all. Don't get me wrong, we still have 'issues', ( him stuffing his chops, then getting a chest infection! ), but as annoying as it is , I think we'll take it.

I know you were a bit nervous about going, but like us, you maybe though 'what choice do I have' other than to crack on and LIVE .

A thousand clapping emoji's for you. Get planning the next trip. We are off to Greece- too hot here . and thinking about Japan next year- finger xxx

Keep keeping that faith

Hilts

Thanks for the responses. David had 4 feeding tubes last year,  (both nj and ng), unfortunately they all came out by themselves - he was in hospital one time and the nurse straddled him to try and push it back in, I was horrified to hear this. He then had a stent fitted, which at least meant he could eat, even if it was a limited diet. He's lost 6stone, got down to 6 stone 1lb this May, he actually stopped eating real food at Easter for no particular reason, but he had quite a good choice of liquid supplements, and had put a stone on. Unfortunately he was taken into hospital last Tuesday and they don't seem to have any idea how to proceed, and his weight went from 47  kilos to 43.5 kilos in 5 days, (he hasn't been weighed since Friday). His blood pressure is also going down, as is his haemoglobin, no one seems to have answers for us as to what is going on. One positive is that, after 35 years together we are getting married tomorrow, I hadn't realised you could get married with only a couple of days notice, but I guess that's how serious his health is?

Still trying to keep the faith!

Emsnan

Hi Emsnan, 

Ding ***- a wedding! Congrats n all.

In my very humble opinion- your man sounds dehydrated and malnourished as 'ell. He sounds like the most pressing need is to fatten him up- I think that needs to be stressed to your team- are there any nurses that you can ring? Dietician? 
Again in my experience the less you eat, the less you want to eat. If he can put on a stone while taking supplements then it just proves that this needs to be addressed pronto. Once that is sorted then you are freed up to deal with the unwelcome guest, without him wasting away!

Blood pressure drop is often related to dehydration.

His 'mood' will also no doubt be a factor here- my goodness- he must be dragged down by it all. I think this is the last place people look, but again in my humble opinion , it is a major factor. I am still very angry and have only just recently put a name to it- how I deal with it- well who know, but at least after 2 years I've put a name to it,

What is (soon to be) husbands take on it? What does he want- apart from it to all go away that is?

Have they ever used a PEG feed??. That is well stitched in and never falls out?
Mine had a Jej, it fell out , but only after his chemo was done- the stitches'popped' and he didn't think to 'mention' it to anyone! Funny that.

Keep that old faith

hilts

ps they have just edited out Kong starting with a D- what is 'rude' about that!