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 Ray!

So good to hear from you as we've all missed you! Good the hear that you are generally doing well and I hope your gallstones settle down and they can sort you. Sorry to hear about your wife, good job it's been caught early. It's just not right!! What a coincidence with Bfg.  You are all so strong. 
As you will know from the thread my husbands Rollercoaster got even more twisting but he recently had the good news that CT scan was clear and everything seems as good as it can be so everything crossed.

I understand why you needed to 'get some normality back' but thank you so much for posting as we've all been concerned for you and missed you. 

keeping the faith despite some serious reality

Milly 

RayB, that's so great to hear from you, yes the thread you started has been so helpful.   I'm so sorry to hear your wife is going through cancer as well as [@bfg]‍ 's wife.   After all you've been through news like that hits like a ton of bricks.

The hot tub in the conservatory sounds lovely!   That's one thing you have I'm jealous about!
thanks for writing and updating us.

Sally

OMG- RayB - big clapping emojis x 1000, 

You are back and okay- you have been missed xx Seeing your post really made me smile today .Great to see you've done some good stuff, I won't mention the hot tub to my husband ! Give him ideas! Sorry to hear about your wife's ( and BFG's) troubles. What is it with cancer at the mo!!! It seems to be bloody breeding. 4 people in our road also recently diagnosed with some type or another!!
Ah- gallstones- now that is something I am an 'expert' on LOL. mine was whipped out 2018! Mind you according to my GP, it was IBS for 6 years grrrrrrr, until I asked for a scan and , not just a 'bag of grit' a huge bag of marbles! Surgeon said post op that it was 'rancid' and years in the making LOL, nice description (:  no 'IBS'since had it out - funny that!
We are pretty good- husband waiting for Haitus hernia repair, as bowel has gone wandering upwards and causing a cough, which he's had since a few days post op, but otherwise all quiet. He is back at work and doing good- although did have his flu jab on Saturday and feels whipped ):

Keep smashing it and keep the faith y'all

Hilts

Hi Mille , sorry can't remember if I responded or not .

Got the exact amount out of husband and it was £180 total for the 3 of us. They / he did not insure for the the OC going forward as of course he doesn't have it anymore ( for now fingers x). He declared it on the form and that is the price they came back with. So seems once it has been dealt with it is not that relevant to the risk ( of them paying out) , if that makes sense.

So your Kev will be in the same category I guess.

 let me know what you turn up.

We have been to the US before and absolutely loved it, but first time with kids. We are probably going to do Orlando, gotta be done , we've done it, but one time offer with the kids and then out to the gulf coast for some R&R- for us. We are expecting the insurance to be a lot more!!!, but will go anyway.

Keep the faith

Hilts

Hi Hilts,

Thanks that sounds pretty good. As I say we have insurance but they excluded OC so anything related to it isn't insured. Will see what T (ui) say. As you say fingers crossed they don't have it anymore so I kinda see where you are coming from but as you've said insurances are renowned for not wanting to pay out so if anything happened they may dispute it? Like you've said if you're in Europe it's easier despite the dreaded B word lol.

Re the States yes we did Orlando/Florida pre kids then took lads when they were in their early teens. 2 weeks in parks but inbetween we hopped over to Coco beach for Kennedy Space Centre and also Daytona Beach. Then down the Everglades/ gulf coast and the Keys for a week. Key West was absolutely fab - so different a bit 'hippie/boho'. 7 mile bridge - amazing! Happy days!

Any news on date for op? The Tapas meal sound good!

I've been swimming today for the first time since this all started and I went to choir last night! 
 

keeping the faith

Milly

Hi Mille n'all, 

Thanx- yep, date came through last night. Op will be THIS Tuesday- 9th nov!!!!. Sooooo quick- they don't mess about. Day patient.......apparently- although I guess it depends on what time he goes to theatre and how big the job is when they get in there, but all fingers xxxxx! Bad night last night with coughing, so can't come soon enough.

Will update.

Keeping the coughing Faith!
hilts

Hi Hilts and all,

That is quick which is good as hopefully it will all be 'done and dusted' before the festivities commence. It sound like a standard procedure but like any op you just want it over and done. 

Lee I hope your meeting with the surgeon has been Ok and your dad gets his operation date soon.

Sally has your husband had both his consultantations now?

keeping the faith 

Milly 
 

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 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 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 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

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 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