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 Hilts,

Apologies for asking again lol! Just to be clear did T (ui) £200 extra premium cover the OC? We are looking at a holiday to Tenerife - same company. As I said we do have insurance so both covered for everything apart from OC. 
 

keeping the faith 

Milly

Hello everyone.

This thread is turning into a huge fountain of experience/advice for everyone, as I have said before its great to be able to share feelings/worries and just be able to see you’re not the only one on this OC boat of ours it`s a bumpy rollercoaster ride for most but this place has been a great help.

I have been missing in action since the end of July, just trying to get on an even keel and move on with our family life.

A lot has happened since I last posted, we have half dismantled and rebuilt our conservatory to install a hot tub, bit of a mission to say the least, but as ive been told we bloody deserve it lol.

Regarding my heath I have been managing to eat my normal diet but in smaller amounts, but I can tell when my NEW stomach tells me I have reached my limit. Only one thing worrying me since my treatment around a month post op was a pain in my right upper rib cage and after a recent CT scan I have Gallstones lovely...NOT! Surgery may not happen because of the surgery already performed, could be too dangerous. Will update you all in the New Year when I have my next check up.

After 6 months of recouperating at home I decided it was time to go back to work, although on light duties. Time to get on with life or so I thought, only to be hit with another huge blow this time it was my rock, the wife. She has been diagnosed with breast cancer, caught early thank god and has just undergone a lumpectomy hopefully they have it all and no future operations needed. So still dealing with the big C.

Hopefully more people will come across this site and join the OC ride with us.

Keeping it real.

Ray

Hi Ray

Great to hear from you again, the RayB forum has missed you.

I know that you and I were fairly close timing wise on our respective ops and follow up flot cycles, but my wife had a lumpectomy for a breast tumour too a couple of weeks ago. She has been told that should be it and they don't want to see her for another year.  But how spooky is that?

I have no gallstones though :-), but do share the diet routine and  am acutely aware of what happens if you don't listen to your new stomach. 

You will love the new hottub , it's proven to be very therapeutic.

Oh - and we finally told my family that we finally got hitched over a year ago.

Keeping the faith real!

Cheers

Bfg

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 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 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 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

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