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 Milly 

We had a meeting with the surgeon today (only 1 person allowed in the room) but we managed to 'squeeze ' my Mum, Dad,  translator and myself all in!.

The surgeon said pre OP in next few days then the surgery within next 14 days.

He said they'll open my Dad,  take a biopsy and get results within 15 mins to see if it had spread - if it has then close my Dad back up and no surgery- if it hasn't, then the operation will last 8/9 hrs. The surgeon said hopefully no complications but quite possible.  He also said 4/5 days in icu then 2-4 weeks on the ward depending on recovery.  

This all seems so surreal as for the last year since first diagnosis,  there was no possibility of surgery- now we are just hoping all ok when they perform the OP and what they find.

Thanks for asking 

Lee. 

Hi Lee

Great news on the plan.  My op was about 8 hours and a couple of days on ICU, then out 9 days later.

We did plan to visit southern spain (we can fly to Alicante without too much trouble from our local airport) in April last year with a view to doing a road trip to explore the area of to the east (around Denia and Javea) with a view of getting residency before brexit took hold.  Somebody then took one look at what we are going to do and decided to send a plague to stop us from travelling, 3 different tumours for my wife and then to top it all off, my little embuggerence in October. 

So when we do go to Spain, it will be last minute and unplanned so expect a quick note on here asking for advice on where the best place is to get a cold one.......

Hilts - hope all goes well with hubbies op.  My wife's last removal was a day job - but it still knocked the stuffing out of her for a good week afterwards.   Baby steps.  :-)

Oh - and I hadn't realised. 

Happy Anniversary everyone! 

When Ray posted a couple of days back, that was exacly 1 year from his first post.

cheers

bfg

Hi Lee, 

I can't remember if I responded to your previous post, but anyway.......excellent stuff regarding the op. They are looking at curative I presume if they proceed after biopsy??? So many different combos out there.

As for the op itself- yep , I think the standard has been 8-10 hours on the slab! My husbands was 10 as it was keyhole, more 'fiddly' (: 2 or 3 days on ICU as I remember then chucked out day 8- but only because it was xmas eve, I think it would have been a tad longer as his chest drain was refusing to dry up!
Most have had a tad of post op lung bother, but all sorted, for all I think.

Your Dad will be nicely blotto for the whole lot, but for us watchers it was/is a strange old day.... for me, I found the best thing was distraction- I went to work, probably as useful as a chocolate fire guard, but distracted nonetheless (:

All the 'victims' on here were hauled out of bed the next day(: I think, no respite, fluids , if all well the next day. Plenty of 'fluids' for you too (:

Keep us up to speed and very very best wishes

keep keeping the faith

Hilts

Hi bfg, yes the Brexit effect has hit us all really hard here - I'm getting the feeling that some efforts will we made to easy residency requirements as many applicants have been refused.  We are based just near Alicante airport but been upto Javea, Albir Calpe many times. I'm sure we could find somewhere for a cold one - just let me know if you do make it over here.

Lee

Hi RayB

we wondered what had happened to you ? good to hear you are still with us , take it easy.

Regards

Douglas

Hi Hilts,

There seems to be a thin line between 'curative' and 'palliative'. The surgeon and oncologist have said that there is a small chance of cutting out all the cancer but they seem to be leaning towards the operation giving more time. The surgeon said today that if the OP goes well then it could be 2/3 years before it returned and then we could attack it again with more chemotherapy. As much as this isn't 'a permanent solution ', it Is a much better outcome than we have been told for the last year (before surgery was a possibility).

A few days of relaxing now before we get the date of surgery. 

Lee

Hi Lee,

Yes we had the same warning but not the biopsy. Standard 8-9 hour op. Hilt's husband is the only total keyhole surgery I've heard of. My husband was a hybrid, keyhole on abdomen and open at the back. As you know recovery was meteoric until the very unusual complications (never happened before unusual!) with the drain removal and everything that followed. However he recovered and has made a good recovery. Much longer stay in ICU, HDU etc BUT they sorted him. They are experts and yes whilst there are risks it doesn't mean it will happen and if it unfortunately does they know how to deal with what happens. The best thing to do I think is treat your dad as an individual no two people are the same. As Hilts says hard day for you all but keeping occupied is the best thing to do. My son took me out for a long walk and a pub lunch - felt surreal but helped enormously. We will all be routing for you, please let us know the date when you get it.
 

keep the faith Lee and remember just how far your dad has come

Milly

I 

Thanks Milly...I'll remember the walk and lunch with my Mum on the day, good advice. 

Lee

Hi Bfg

What a coincidence! My wife Elaines, breast nurse mentioned that it`s quite common for cancer to happen in the same household. Stress/worry, makes you wonder. Definitley better letting the rest of your family know about your hitched status. Congratulations to you both

Hi Milly

Really pleased the CT scan was clear. Yes some sort of normality is definitley the key and making the best of what you have got.

Hi SallyR

I`m glad you and others are finding this forum, as they say its great to talk. It help me a great deal.

Hi Hilts

I have missed being on here. Cancer defintley seems to be on the up, me and the wife have just watched the Dark Waters on Netflix and it really makes you think. I wonder what your husbands take on it is, worth a watch ?Well I never knew about the Gallstone until after the op, but from conversations with the upper GI nurse and the consultant they thought I did. Hopefully it can be removed. Fingers craossed the husbands op goes without hitch. Oh yes Flu and Covid booster to look forward to Not LOL.

Hi Lee

Fingers crossed your dads operation goes to plan.

Keeping the faith

hi Lee, 

From just reading your post, sounds like the surgeons think that your Dad is a 'very good case', they seem really really realistic and positive. Sounds like what most of us have heard pre op "we'll  chop out all we can, but no guarantees "  we were told that, and if they couldn't get it all, they would blast the rest with chemo. I think what I can say for defo is that they wouldn't even be doing it unless they thought he was ' a good bet'. Most of us on here , I think, only knew they got the lot after the histology came back 4-6 weeks after the chop. Most of 'us' also had post op chemo , regardless of histology, just to finish of any little *** that we're still hanging around (: So millions of fingers x emojis 

RayB- yes , you were VERY MUCH missed. Yep, get rid of the gallbladder if you can, honestly, after what you've been through it would be like pinching your finger !!! All keyhole, out same day.(: I would never have 'passed' mine naturally (closest thing to child birth apparently! ) too big! . I'll mention programme to husband. We are watching one of the most childish, hilarious, inappropriate' drama's on Netflix at the mo. A 'spoof mocumentary' American Vandal. I've had a abdo pain after laughing so much!

Anyhows 

keep keeping the faith

Hilts

hi Lee, 

From just reading your post, sounds like the surgeons think that your Dad is a 'very good case', they seem really really realistic and positive. Sounds like what most of us have heard pre op "we'll  chop out all we can, but no guarantees "  we were told that, and if they couldn't get it all, they would blast the rest with chemo. I think what I can say for defo is that they wouldn't even be doing it unless they thought he was ' a good bet'. Most of us on here , I think, only knew they got the lot after the histology came back 4-6 weeks after the chop. Most of 'us' also had post op chemo , regardless of histology, just to finish of any little *** that we're still hanging around (: So millions of fingers x emojis 

RayB- yes , you were VERY MUCH missed. Yep, get rid of the gallbladder if you can, honestly, after what you've been through it would be like pinching your finger !!! All keyhole, out same day.(: I would never have 'passed' mine naturally (closest thing to child birth apparently! ) too big! . I'll mention programme to husband. We are watching one of the most childish, hilarious, inappropriate' drama's on Netflix at the mo. A 'spoof mocumentary' American Vandal. I've had a abdo pain after laughing so much!

Anyhows 

keep keeping the faith

Hilts

Thanks Hilts, nice to hear encouraging support. We have some family arriving from the UK tomorrow (first time since start of covid) so it'll be a nice few days catching up and trying to explain the emotional rollercoaster we've been on...and are still riding!

Thanks 

Lee 

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 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 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