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

Hello All,

I have been following you all for some time now and firstly I would like to thank you all for sharing your stories. It really has helped me since my dad was diagnosed with OC back in early spring! As most of you have said on here, receiving the initial diagnosis and spending every spare minute googling was the worst thing I could have done. Until I came across you lovely lot and you really put my mind at ease! 
Dad was given the plan of FLOT, Op,FLOT and no spread or in lymph nodes which was amazing!. He really took the first lot of FLOT in his stride despite it being delayed for a week. Last week he was due to get his op, what an emotional day that was. However while under his oxygen levels dropped and the doc decided to stop before deflating his lung. He's now had some respiratory assessments which he seems to have managed no bother. Fingers crossed this is just our dip in this rollercoaster of OC (I feel like I even talk in your jargon haha) but has anyone else had to go through respiratory assessment? 

Hi Scott

If it's the one where you have a respiratory device that measures oxygen levels,  ecg monitors for the heart and put onto an exercise bike that increasingly stresses the body - then yes, but I thought that was pretty routine before the op as like you said,  they deflate one of the lungs and at about 6 - 8 hours is pretty gruelling. 

They should get him sorted out soon,  and if you have any questions then please shout. 

Cheers

Bfg

Hi RayB.   We have seen Dark Waters.  Yes what a shocking film, especially as it's based on real events.  Certainly worrying.   Shows how powerless the world is really up against big chemo/pharma

Hi Scott,

Welcome to 'the club'. As Bfg said my husband had pre op assessment on bike with mask etc which he passed with flying colours! If you've read this thread you will know my husbands op went really well but he had post op complications which resulted in respiratory problems in his left lung (not the one which was collapsed) and another emergency op. All sorted now fingers crossed (it's a jinx thing lol). 
They are obviously being careful and hopefully if the assessment has gone well he will have the operation. Any others questions as we all say feel free to ask. To give you hope we have just booked a holiday to Tenerife in January so fingers crossed again lol.

keeping the faith (blame or in my case thank Hilts for this one)

Milly

Hey Sally and all,

How's your husband doing? Kev has had some episodes of the dreaded dumping but not too much and it can be attributed to what/ how much he has eaten. So continuing to learn. Has anyone got the Oesophageal Patients Society card re eating in restaurant ie, smaller meals due to medical requirements and the 'urgent loo card' who knew! Also we are looking into getting the radar key for disabled toilets has anyone asked for one?  I do think it would help many people,not just OC patients,if restaurants automatically did a small plate as asking for a 'child's meal' can be embarrassing and let's face it is usually limited to something and chips! 

I don't think I'm going to watch Dark Waters - had enough of the 'Dark Clouds' this last year! Lol.

Anyway keeping the faith

Milly

Hi Milly, yes wise not to watch Dark Waters!   That's so good Kev is getting along well and not too many dumping episodes.   My husband is gradually getting better.   The crashing after eating is not so bad now.  He used to be out of it for 2 and a half hours after eating anything, so strange.   He is trying to stick to eating things he knows are "safe" for him and high in nutrients, like variety of nuts, biltong, soup.  Alcohol is not a problem at all and even seems to help??   The neuropathy from the chemo definitely affected him internally and this is all gradually wearing off now.

what a great idea a holiday to Tenerife next January, something to look forward to.   We r in the process of buying a house.   Maybe not such a great idea for stress levels!!
keeping the faith for you Milly and everyone,

SallyX

Hi Sally,

My husband suffered both times with neuropathy but definitely worse in the second post op cycle. I never and I don't think he did either, thought about it affecting internally in that way. He has had more post nasal drip (yuk) but it does seem to be getting better. Strangely a beer or fizzy drink before food definitely seems to help. Good job we are all inclusive lol. 

Hopd your house move goes smoothly and it will be good to have a fresh start in a new home.

keeping the faith for everyone 

Milly

Hey Scott, 

Welcome to the club ! 
I think certainly for me, I have 'spilled' everything since D day, or should I say E day ( endoscopy) 26th July 2020. The day husband was diagnosed. We are out the other side ( for now- I always say that, just in case (:) but he is having a hiatus hernia op on Tuesday- coughing +++++ since day after op and needs stuff tucking back in ! 'Complication' of keyhole.....apparently.

As for lungs- well where to start. I think most of the victims had the pre op lung work up- treadmill, bike, lung capacity expanders, hospital fitness tests etc. Most of us have also had post op lung issues, mine just a tad of fluid, some quite sticky, pneumonia, and More ! Goes with the turf and some trouble to be expected. I hope you are reassured to some degree that many of us are out the other side, with lots of war stories and bullet wounds. Google etc is indeed an absolute horror show, but we can't help ourselves (:

So Scott, as we love to say Keep the faith you will get there!. Even after 18 months we still look at each other and say WTF just happened. Still seems surreal!
 

Neuropathy folks! Darn platinum. Good at cell murder, a little too good and does nerves everywhere as well inside and out !. Husband still has mild tingly toes, but that is all and not a problem, all the cold feelings have gone as well as all the other lovely side effects. His last platinum was 4th ish feb as he has a lovely full on anaphylaxis to platinum no 6. 
Millie- so Kev has the post nasal drip too and 'cured' by beer- well funny ole thing eh. Him using old fashion antihistamines like piriton really really helps x

Anyway off now for tea and bangers !
keep keeping the faith ( I have sort of moved it on)

Hilts x

Hi RayB,

Thanks for your kind words. Yes make the most of your hot tub - sounds fab! Our conservatory came into its own during lockdown and all the trauma of the last year! 

keeping the faith

Milly

Hello All,

Thank you for your replies. Strange enough he had none of that pre first op and still now his assessment on Friday seemed to be just breathing into a high tech spirometer? He's been given another op date for two weeks so fingers crossed everything goes well. 

It is so positive to hear all your stories of being out the other side! I get married next summer (3rd time lucky after Covid set backs) so to have dad back and fighting fit for then would be great! Keep your positive stories and advice coming, they are great! 

Hello All,

Thank you for your replies. Strange enough he had none of that pre first op and still now his assessment on Friday seemed to be just breathing into a high tech spirometer? He's been given another op date for two weeks so fingers crossed everything goes well. 

It is so positive to hear all your stories of being out the other side! I get married next summer (3rd time lucky after Covid set backs) so to have dad back and fighting fit for then would be great! Keep your positive stories and advice coming, they are great! 

Hi Scott,

It all sounds positive for you dad. Your wedding will be a real positive goal for your dad and all of you to focus on after the operation. 
 

My husband was advised by a friend of a friend who had the op, plus folks on here , to eat plenty if you can and if needed try to gain some weight or in two weeks in your dads case maintain his weight and exercise. We actually went away to the Peak District just over a week before my husbands op and did lots of walking. It was at the end of April just as self catering had opened up so we just used it as 'our house' walked, ate, slept. Then we both had to self isolate at home after the COVID Test.Best thing we could have done, lots of walking up hills. Any exercise your dad can do which exercises the lungs will help. It surprised me that my heart rate dropped from resting at 69 to 64 after a week of pushing ourselves up hills lol. Hilts husband set the challenge of walking up and down the stairs for 10 mins which I never managed lol - my husband managed it after a week of doing it every day - but it all depends on how your dad feels - he doesn't want to overdue it lol. Anything like walking will help. After all my husband went through the surgeon said his fitness and determination helped him recover. My husband also asked and got referred to the 'active recovery' with NHS. He did this pre chemo and continues it now through zoom.

To add calories if required I add skimmed milk powder to whole milk and give it a good shake 1-2 tablespoons per pint. Also milk shakes with ice cream in are good. Adding cream to scrambled eggs and butter etc will boost the weight. Hilts husband had full fat jersey milk. Your dad's dietician should give you advice. 
 

Hope this helps, keeping the faith for everyone,

Milly

Yep,

Hopefully he will be shoving you down the aisle and back on the ale (: by then. My husband has just managed 4 pints in one go !!! I despair honestly- he could only ever manage 3 pints before OC!!!

My husband was pretty fit before op, BUT, always one or two, or more on this rollercoaster! - it was not lung capacity fit. Not gym fit, but generally active. His advice was to increase the stamina & lung capacity- soooo his invention (probably not) was to walk up and down the stairs. Not fast, just normal speed, he worked up from 2 mins to 10 mins x 2 a day. Trust me- I was a gibbering wreck after less than a minute- it is tough tough, but free and did the trick- unless he lives in a bungalow of course !

You'll get there

keep keeping the faith

hilts