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 Leo, it's been a wee while since I last got a chance to read through posts.   You have certainly moved on a lot since I last saw your initial posting.   Let's hope the ANP can fix you up with something you can drink that is nutritious and can give you the energy to deal with everything.  As [@dooggreg]‍ Douglas says it is good to be aware of other conditions that can affect the oesophagus, especially ones that mimic cancer and can lead to cancer if left untreated.   Keeping my fingers crossed for you

Sally X

Hi Tabnabs

Hope you are fighting off the dreaded 'c' (see what I did there!) and pretending you are in the I'lle de Blanc with a glass of burgundy and some fromage.

Andi - hope you are doing OK. The run up is probably the most tiresome bit - and we're thinking of you!

Hope everyone else is doing OK!

Cheers

Bfg

Hi Milly, so glad that Kev is past the finishing line and starting to feel a bit better.   My husband is a wee bit better, but struggling to eat anything solid.   In fact he hasn't been able to eat anything remotely solid.  The oral thrush, which has been difficult to clear up despite nystatin drops and fluconazole, is making it difficult to swallow.  Luckily he still has the jej feed and has that at night whenever needed.   It's a big relief that the chemo is over now anyway, and mentally that is a big hurdle.   I was away last week working, so he was quite glad to have me out the way and get some peace!   
Sally X

Hi Sally, 

Hopefully the thrush will clear up so he is able to eat more. Presumably the dietician is helping with advice too.  A week away albeit work sounds good! Yes it is a big relief when chemo is finished.

keeping the faith

Milly

Wow, 

I've only been away 2 days!!! A flurry to catch up on.
Oh Tabnabs- bless you, red emoji with lots of -'fkgjgjgjt, coming out of mouth. You're holiday will keep until you are feeling better I'm sure. Rough as guts, not heard that one for years LOL. Used by my cousin a lot when describing his brother's girlfriends!!!! What a guy!

Leo - if you are getting messed about at work, then long term sick is the only way to go, but you are clearly mentally and physically 'run down' , you can't eat etc, surely that is a 'good enough' reason to be off!!!! 
 

Andi, you are probably done by now, coming around wondering what the dickens has just happened- you'll be fine- we are 'monitoring' you (:

Sally& Millie- that last round , recovery feels endless- I don't know what it is, but wow is it weird, you are stepping off the rollercoaster, but the final bend seems the longest, really bizarre when you think "where is my chemo this week" , oh , I've finished, what am I going to do now! From our travels I would say this is when recovery really begins, both physically and emotionally. Sal, if the jej tube is still in, husband found that putting a couple a pints of water down it a day really helped. He was so nauseous, with loads of blisters, he couldn't eat, but putting the fluid in and the overnight feed really really helped and when the nausea passed, he started to eat fairly well. Shoving that down the jej also takes the pressure off eating and drinking when you feel absolute shheeeeite. And thrush, such an absolute pain. Blighter to kill and itchy foul taste, but die it will (:

Lee- hope y'all are trucking along.

Everyone else - keep it up and keep that old faith

Hilts

Everything happens when you disappear Hilts. 

Yep I've made contact with a few team leaders I've helped in the past and one let slip that a supervisor position in my old department that I only missed out on by 1 point when I went for it before is coming up, so I'm going to keep my eye on that one. 

But for now I shall sit at home and enjoy the time off. 

Yes - all done. Remarkably pain free. Have horrid cough and lung refuses to inflate. Still in ICU xx

Glad to hear you're pain free at least. How annoying about the lung though! Have they given you any timescales on how long you could be in ICU for? Xx

Hi Andi,

I've been thinking of you so it's good to hear that you've had the op. Everyone is different but I'm sure they will sort you out. My husband had a longer stay in ICU as you know and had lung problems after his second op but he's doing well now. ICU  staff are highly trained.

Keeping  the faith

Milly

Oooo whoop whoop Andi yaaaay 

Huge bunch of hand clapping emojis .

You're DONE.

congrats.

Yep, post op is 'interesting' . Opiates help an awful lot (:. Lung will reinflate- the hospital will give them no choice (: Honestly, though the care is soooooo darn good, any blips will soon be put in their place.

So - 2 days post op?  They'll have you up soon (:, then sips of water etc. Small steps every day (:

Husband was there on ICU for 2 days I think. Chucked out on day 8 ish.

I bet you can't belive you're all done, slept through the lot(:

Take care and keep posting

keep the faith

Hilts.

Oooo whoop whoop Andi yaaaay 

Huge bunch of hand clapping emojis .

You're DONE.

congrats.

Yep, post op is 'interesting' . Opiates help an awful lot (:. Lung will reinflate- the hospital will give them no choice (: Honestly, though the care is soooooo darn good, any blips will soon be put in their place.

So - 2 days post op?  They'll have you up soon (:, then sips of water etc. Small steps every day (:

Husband was there on ICU for 2 days I think. Chucked out on day 8 ish.

I bet you can't belive you're all done, slept through the lot(:

Take care and keep posting

keep the faith

Hilts.

Really bad day - took epidural out - had been in a lot of discomfort over night which changed to pain in n the morning. Sorted now. 2 drains out as well - one to go!!  Think I'll be in ICU for just over a week - 7 th day tomorrow. Recovery now. My gorgeous granddaughter gave birth to my first great granddaughter today - Emmie 6 lbs - can't wait for a cuddle.  

thank you all for all your thoughts and help. 
 

Andi xx

Congratulations Andi! A great Grandmother! It won't be long before cuddles are in abundance.  :-)

Great news on the drains as well. It was a huge relief getting them out. 

Keep clicking the button!

Cheers

Bfg 

Hi Andi,

Congratulations on the birth of your great granddaughter! Sorry you've had a bad day but pleased to hear that your pain has been sorted AND you've had two drains out! Progress. As everyone says small steps but steps forward.

Have you been allowed any visitors? Not sure what the policy is now.

keep going and keeping the faith,

Milly

Sadly no visitors yet - still on ICU.  Xxxo

LOL Andi 47, 

You said you had 'discomfort ' overnight , the epidural was removed and now the pain is under control- you sound like you were giving birth (: LOL. You must have been having 'sympathy pains' for her .  Nice new baby for you to look forward to spoiling (: 

The whole visiting thing is quite weird and very regional. I was allowed into ICU for the first 3 days, then completely banned from the whole premises, even when I picked him up, I had to wait outside. Then the chemo unit, where everyone is immunosuppressed, I was allowed in ‍♀️.  Mind you getting into any hospital is easier than getting in to see GP's!!!- they are a total law unto themselves grrr

Any grub or fluids yet?.

keep plodding and posting

keep the faith

Hilts.

Hi All,

Yes I agree Hilts it is very regional. VIsiting was in exceptional circumstances when Kev was in and I was only allowed in the first session of pre and post op chemo.

I hope you've had a better day Andi and are continuing to make those small steps towards recovery. It will get better.
A lovely goal to see your new addition to the family. 

Hope everyone  is doing OK. Kev has an appointment with the surgeon tomorrow and an oncology one at the end of the month. We are going to the Lakd District on Friday for a week with our family. Booked a lovely house so fingers crossed! Planned a champagne breakfast to celebrate end of treatment. Find it hard to comprehend it's been a year since this all began.

Still keeping the faith for everyone 

Milly

Hi Millie, 

You have a blooming marvellous time x Enjoy.

Good vibes for the oncologist etc. So weird now that the appointments are monthly max!  and not even that for us now. CT scan on 13th for this wretched coughing, but I think I 'diagnosed' it finally last night. The reason he doesn't cough after 3/4 pints is because all that fluid is washing the pipe work through, so nothing remains to irritate his airways. Last night has beans on toast! Can you imagine anything more claggy! No flush through= coughing +++ . Tonight fish, no claggy stuff and a pint of squash- we'll see!

As far the last year- where to start with the processing!! How does a mere human even begin to. We are in that stage now. We ran around all summer, holidays, new cars etc, now we are quiet , the overthinking is in full flow. As I've said before completely expected, but still not nice. We still sit here thinking WTF (:

Anyhows- have a great time and always keeping the faith

Hilts 

Yes Hilts,

It is a lot to process. The clinical pyschologist has suggested we treat the next few months as a 'convalescent' period to regain physical and mental stability gradually introducing more normal routines but Kev resting as needed. He has been through such a lot as you all know 3 major ops in 8 weeks and then the post op FLOT 5 weeks after his last op on his left lung. 
Did you find your appointment at Maggie's helpful? 

I hope the CT scan is helpful and I think you could be right about the 'clogging'. My husband has always had a drink with his meals and has continued to be able to do this albeit smaller amounts. He has had a few cramps after eating and a few 'dumping' episodes but generally his eating is much better than he or I imagined

Thanks for your good wishes soo looking forward to a change of scenery and a bit of 'normality'. I had a facial today - first one in over a year - wonderful!

Keeping the faith

Milly

.

hi Hilts 

just a bit on the irritating cough situation which everyome seems to suffer from just over the recent two months mine has improved and almost vanished since i started rinsing out my synuses regularly and the coughing up of mucous situation has reduced by a lot just another step forward i hope , the saline rinse kit i use is the one most popular one from the chemists any way onwards and upwards , still no news from Rayb , i finished my course of relexology and the jury is out on that one from me , hope you are both well and take care

Regards

Douglas

hi Andi

Yes that epidural pain relief is so good  and the transition to the other morphine based stuff is a bit trial and error i weaned myself of that quickly as it has a terrible reputation for constipation and thats something you don't need at this time , good that you are a week post op and it won't be long till you are home left wondering what has just happened , trust me it's very strange at first after the whirlwind of the treatments and surgery to be suddenly at home with minimal medical care , anyway keep us posted as to your progress , i remember when i was in the same position just over a year ago and it's all a fairly distant memory now , anyway well done you and take care.

Regards

Dpuglas