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

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

Hi all,

The appointment with the surgeon went well. He was very happy to see Kev and how much progress he has made. He said Kev had seen the very best and worst and everything inbetween! He looked at all his scars and battle wounds and was pleased with how they have healed. I must admit Kev is good at putting E45 on them all! He was pleased with him hitting the top of the spirometre and all the work he's done exercising both before and after the op. He has asked him if he would help with other patients preparing for the op but told him not to take his top off lol. 

So off to the Lakes on Friday and then scan on 20th followed by meeting with Consultant Oncologist a week later. Hopefully that will be good news too. 
 

Douglas interesting re reflexology and also info on Sinus rinse. 
 

Andi I hope you are continuing to make  progress.

keeping the faith

Milly

Hi Milly,

That's really good news to hear...time for a well earned break,  enjoy it.

Lee

Thanks Lee! I hope your dad is doing OK.

keeping the faith 

Milly

Hi Milly that's great news to hear!   Enjoy your holiday in the lakes, it sounds a lovely idea, you must be looking forward to it so much!  SallyX

Hi Milly that's great news to hear!   Enjoy your holiday in the lakes, it sounds a lovely idea, you must be looking forward to it so much!  SallyX

Hi Sally tanks for your good wishes and we are certainly looking forward to it. I Hope your husband is feeling a bit better. Have you had a follow up yet or a plan on following up? 
keeping the faith as always

Milly

Hi Milly. He has a video call with the oncologist on 14 Oct - next week.   Then a call with the surgeon in November.   He is still "crashing" after eating, but maybe slightly better at only eating tiny amounts which helps.    He has found he can eat small portions of cereals and also nuts so at least there are some things he can eat.   
sallyx

Hi Sally, 

The crash after eating- yep. Old dumping. What husband uses and finds them brilliant is the glucose tablets diabetics use. Oblong things in a long pack. Any pharmacy will do as a 'leading supermarket' beginning with S (:. About a £1 , so always on the bottom shelf, expensive same stuff further up(:

Husband found the chief perps were potatoes, rice, carbs generally, not Beer for some reason! and when he mega overeats with a lot of carbs, like curry rice & chips, which is frequent): he is learning though- albeit slowly! Wally (:

It has got better though as time has gone on. 
keep the faith

Hilts

Afternoon all, hope you're all OK and keeping trucking on.

Started Round 1 of post op FLOT on Wednesday and definitely felt it Friday, Saturday, Sunday and yesterday a bit more than pre op.

Wasn't much fun at all and like someone said to me, everything feels dialled up a notch - but thankfully feeling more human again today and getting back to normal.

Hilts. Milly, Sally ... how did your respectives find their post op FLOT - similar to pre or dialled up more too ?

Andi, hope you're doing OK the other side of the op - well done for getting through it.

Hi Redski, sorry to hear you're feeling a bit rough - stay strong as it's the last bit and the worse is over.

Lee

Thanks mate, really appreciate that !

Hi Redski.

i feel for you. It is like Groundhog Day, but this is the final straight. 3 more and you are DONE. After a year, no more (:

In answer to question- yes, absolutely, up notches I would say (:.  Sorry, I have a rep for being totally honest when asked something!! All the guys on the unit felt it too. But they all completed in some fashion. Rumour has it, that now the chemo has nothing left to murder, it causes havoc (: and of course your body has taken a pasting with surgery , mentally just about had enough etc. , but remember nearly finished!!! 
so 'get at 'em' Redski - we are with you

keep the faith

Hilts

Hi Redski,

Yes my husband found post op chemo effects lasted longer and were stronger (sounds like an add for loo roll lol). Seriously though it's not easy but doable for most people or they wouldn't be offering it to patients. 
Count down as Hilts says 3 more then done! My husband found warm baths helped with cramps and drank as much water as he could again. Stick with it - you will get there!

Sally I hope your husband's appointment with the Oncologist goes well and he is able to increase his food little by little. 

On a positive note we are enjoying being in the Lake District and my husband has had his first few beers (not all at once yet Hilts) since Christmas Day which was before treatment began!

Andi I was thinking of you today and hope you are making progress. 
Hilts any more updates on the cough?

Keeping the faith for everyone as always

Milly

Hi Redski, I feel for you.   My husband found the post op FLOT tough.   More difficult than the pre-op FLOT.   The neuropathy symptoms I think he found the worst thing of all, causing painful tingling especially in feet, hands, down centre of face, and internally too, compounded by the fatigue.  He kept as warm as possible, tried to keep going for walks a bit.    Rest, also, don't try to fight the fatigue, and rest some more.   Use your jej feed tube if you still have it for feeding and taking in water.    He managed to complete the 4 cycles of post op FLOT, but could not have done any more.   Your oncologist will be keeping an eye on you, so you will only be given as much as you can take.   Good luck Redski, we are all thinking of you.

SallyX

Hello everyone,

My dad (63) has just been diagnosed with this horrid disease. He is due to get his staging very soon (desperate to know & dreading finding out). Until tonight, the internet has not been my friend. It's absolutely horrifying. After much incessant googling, I came across this thread and for the first time, since his diagnosis, I've felt an air of calmness. 

Thank you. L