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 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 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 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 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

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

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! 

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