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

nice to hear from someone with the same concerns i still am trying to get information on how to get the best from supplements which our modified digestive systems are maybe not getting through our reduced food intake , our government in Scotland sent us vitamin D tablets FOC by post last autumn if you had the flu jab , on another subject yes your right having a higher body weight definitely gave the body the  extra reserves which made the recovery from the surgery easier ,  keep posting , in the meantime best wishes and take care of you and yours 

Regards

Douglas

Hi Milly and Doug,   Thank you for the heads up about the oral thrush,   I guess he has been lucky to get this far with it just starting now...    He has been prescribed an anti-fungal for it - nystatin drops and has been taking them for a couple of days now.   Hopefully it will ease up soon, it seems to be in his (new) gullet which is most sore.

sally X

Glad to see you back Andi.

yep, it does feel never ending, but it does end. It takes about 9 months all in, but of course delays,along the way are pretty much par for the course, not because the nhs is a disaster zone, but things like infections, blood counts etc etc.

Nice one on completing the lovely FLOT.

Thinking..... yes, I can imagine. We are at that point now, I would call us the over- thinkers. It is like our actual problem has been dealt with , so we have some 'free brain space' that those 'types' of thoughts can't resist occupying. I would love to know how to just switch the darn thing off !

I too really miss the people who no longer post. There are several that have dropped out recently . I only hope it is because they don't need us anymore - in a good way.

we have decided to go and see what 'Maggie's' has to offer. Sure it can't make it go away, but what is that saying 'every little helps'.

Keeping the faith

Hilts
 

Hi,

Just to let you know what I still need you all and still read the chats.  :-)

There have been some great posts, interesting questions and Tabnabs I'm sorry to read about the change in direction - that really is, to keep the analogy going, where the rollercoaster almost makes it to the top and then heads off in a direction that hopefully will become clearer.

I'm now 6 months post op and 2 1/2 months post my last flot cycle.  Weight has stablised - still get the "odd" dumping episode, but hopefully these are getting further apart.

Hilts:  I did it!  4 pints of boondoggle! 

Milly:  Bootless and now a menace to us all on the road.  :-)  I bet that's a relief.

Coping mechanism: Cancer does not define me; I choose how to live. But that is me and is often easier said that done especially with covid.  But hey - my wife of nearly 11 months now has 35 years of remission from Hodgkins, had a carcenoma removed from her lung (lobectomy last July which involved 3 ga's in under 3 weeks), an adenocarcinoma SABR'd in February (in between my 1st FLOT and the OP) and due a procedure to remove a 3rd little *** next month (only a day job). When we had the results that a 4th lump was benign we didn't know what to do with the good news. Our request for his and hers CT scanning rooms also didn't happen (I mean if you can get his and hers massage rooms - I don't know what the problem is). It's our 1st year anniversary next month which is also exactly the same day that I was told the tumour was localised and subject to the other tests, I would be on the flot/op/flot path.  Little did I know back then that I would meet all you lot!

So,

still here, still keeping the faith, and looking forward to my "next" couple of beers.

bfg

That's good to hear bfg. Happy anniversary for next month.

Lee

You are definitely an inspiration - I'm due to have the 'op' on 29th Sept or 4th October - I think I dread the second round of FLOT more!! Hope to still keep drinking the wine post op!!  It's just so good to know there is some kind of 'normality' at the end. I still look like Charlie Drake (who remembers him?) - one of my granddaughters said I look more like a grandad than nanny . Hopefully will have hair again one day.

Looking forward to hearing all your stories 

Andi xx

bfg,  great to hear from you, your post made me smile!   Congratulations on the first wedding anniversary coming up!!!   And making that [@Hilts]‍ aspirational 4 pints (_) (_) (_) (_) Well done!!!
 

sallyX

Hi Andi

The 2nd round of FLOT for me was pretty much like the 1st, but with the side-effects notched up slightly and for slightly longer (as I explained to somebdy, your body is still going through a level of post-op recovery when you hit it with the 2nd round).  Nausea was increased - but after talking to the team, different medication was given and this worked.

It took me a while to get back to wine - for the simple but strange reason, that my taste buds were shot.  I'm relatively back to normal now - well normal for me.

As for hair - practically every dark hair disappeared leaving me with whispy grey bits, but 2 1/2 months after the final cycle it's now grown back dark (I did joke with somebody on the risk of goiing ginger post flot) and have ran out of excuses for not shaving regularly.  As for Charlie Drake - yes I remember him - and at 1 1/2 foot taller it's never been said that I look like him.  :-)

cheers

bfg

Well here I am back on the chemo ward, having FOLFIRI, got three months on this then another scan, my ever pessimistic consultant came to see me this morning and said there was no promises that this would work and may have to start thinking about end of life care! Deep joy. Have been pretty quiet recently as have been an emotional train wreck since I got the news.

Doug, as far as supplements go, check with your team, I know mine got a bit snarky with me taking various ones.

BFG, boondoggle one of my old man's favourites, but he's recently got into home brew, last time he did it  our old house was called The Peregrines, so we called it Peregrines Piddle, now we live at Honey Field cottage, not sure what to call it, lol

as for everyone else, thinking of you all and sending healing hugs out everywhere 

Tabnabs x

Hi all 

Wow BFG -4 pints - well done!  Congraulations!

Blimey Bfg you and your wife have had some serious **** to deal with! Your post made me smile as well and gives us hope too!

Congratulations too on your forthcoming  anniversary!

Hilts I hope you find Maggie's helpful  - I'm interested to see how you both find the help available.

Tabnabs I've just seen your post - I can imagine it's been very tough. Pessimism is not helpful. Optimistic realism is hard but you have been through a lot already and have defied the odds. You've seen your daughter get married and your son graduate which I would think at some points in your diagnosis and treatment didn't seem possible. Keep going and maybe ask for support from other sources if you feel it would help you and your family.

Keeping the faith  for everyone 

Milly

Ps Honey Hangover?!

Hi all 

Wow BFG -4 pints - well done!  Congraulations!

Blimey Bfg you and your wife have had some serious **** to deal with! Your post made me smile as well and gives us hope too!

Congratulations too on your forthcoming  anniversary!

Hilts I hope you find Maggie's helpful  - I'm interested to see how you both find the help available.

Tabnabs I've just seen your post - I can imagine it's been very tough. Pessimism is not helpful. Optimistic realism is hard but you have been through a lot already and have defied the odds. You've seen your daughter get married and your son graduate which I would think at some points in your diagnosis and treatment didn't seem possible. Keep going and maybe ask for support from other sources if you feel it would help you and your family.

Keeping the faith  for everyone 

Milly

Ps Honey Hangover?!

Yay BFG, you are back x

My husband is going to be well peeved  about your fluid achievement.LOL.

He still has the pesky cough, he knows why, and knows what to do, ( smaller meals, more fluid), like he needs an excuse to drink more fluid!!! He said to me the other day. " well , drinking more fluid will defo make it better, but I can't possibly drink  loads of fluid in one go" I nearly choked on my tea. No problem drinking 4 PINTS in one go eh.  He was claiming that it was the beer that was making the cough better- I didn't have the heart to say, nope ANY 4 pints of fluid will do the job. LOL. I make him sound like a real boozer .

Nice one for you wife to be clear (:
Andi, the post op chemo is pretty much the same as the first, but a few more intense side effects, nothing that can't be managed though. I think the 'problem' is that by that time you've all had just about enough of all the treatment, it might 'only' be 8 weeks, but that is on the back of at least 7 months before that and 'fed up to the back teeth' is a pretty intense side effect. 
As for the hair folks, yep, mine finished chemo on 23 rd March, all started coming back grey and fluffy, but as with this whole affair, little by little it got longer and darker. 1st haircut very early June and since then all the black is back and curls, only then'distinguished' grey like before, so again, does all recover , eventually. The chemo pasty colour only went completely when he showed it some serious rays, I look at pictures from feb and now and he really is back to his usual,looking self.

Anyway all. Keep the faith

Hilts

Hi Hilts

Thanks for that - I've always had straight blond hair - would be novel to have dark curly locks

Yes - just endless appointments - 3 so far next week - and one the following week. Went for CPX test today but computer had broken - seems to go on for ever.  So good to hear all the positive comments on here - I WILL get through it - just a long way still to go!! 
 

Andi xx

Hi again Hilts

i'm sort of preparing for surgery - can anyone give me any idea of what I will initially be able to eat when I get home from hospital - what I need to get in??

Thank you all

Andi xx

Hi Andi

Your post-op team should be able to get you to the level of what they call "minced and moist".

If you search for "minced and moist diet" then you should be able to find a wealth of information from various medical institutions. 

Get back if you don't find anything and I'll see how my cut and paste skills are going. 

Cheers

Bfg

Thank you x

Hi andi47, 

eating , trust me - treats await you....

As BFG knows, the first delicious ' meal' is usually ' minced chicken & gravy' reformed it think it is called. This is day 2 /3 post op usually .  Coffee/tea comes on day 1/2. Yes I am being a little tongue in cheek (:. He was so happy to get this ' treat' , as it really denoted, job done, eating begins again (:Mine was discharged day 8 post op, which was xmas eve, he had a full xmas dinner all mashed with lashings of gravy, then Boxing Day - guess?? Turkey curry of course- blended (:

TBH- if all is well, it moves on pretty quickly. as BFG said minced , mashed and moist to start.By week 6 , mine was on pie n mash with lashings of gravy, by 8 or before a full 'curry', steak chips, etc. By the time he started his post op chemo he was back on full 'normal' diet including beer (: Appetite dropped during post op chemo.

He finished that in March, and once those taste buds had recovered, back to full fat food.

All are 'fed' post op through something called a Jejuneostomy. Small tube that goes into the small bowel, put in during surgery, with delicious feeds.  So hunger is not really a problem. Guess what though, that also ends, after about 6 weeks..

we never bothered will anything special, just the food I was doing for the household, mashed / chopped with a fork, knife, or blitz in the blended for tougher things like turkey, pigs in blankets etc.

The things to 'get in' are things you like, several on here have enjoyed trifles, cream, etc, but honestly , anything that takes your fancy, adapted(:

Stangely, looking back, it seems eons ago, and in the bigger scheme of things is a fraction in time. Not at the time of course (:

you will be done at some point, once you are out of the 'twilight zone' you'll be on the steak and chips with your blond locks blowing in the wind before you know it.

Keep the faith - you WILL get there

Hilts.

Thank you Hilts - I will look forward to some normality and try not to dwell on the 'in between' stage - as you say - it is only a short time - not sure about the blond locks though xx

(:

Hey, it is very much okay to dwell, cry, shout, scream, give the pillows a thrashing etc. It is a really tough , surreal thing to go through and us humans are prone to pretty spectacular emotions. All part of the tapestry of life (: it is also very much okay to laugh out loud- we did , usually at the most inappropriate things (: and it is defo okay NOT to be okay ((::

Always ( trying ) to keep the faith

Hilts

Hi Andi,

The previous posts have given you some good pointers. My husband is eating normal food, he came home a bit further down the line from the op but I've been pretty amazed at the variety of food he eats. Smaller portions but before the latest chemo over half a normal portion and our portions tend to be on the larger side lol. Trifle, milkshakes and cream cakes are a good boost. I also put skimmed milk in the whole milk (as advised by dietician) for extra calories. He also had forty sips but to be honest it just depends. He has fruit and veg too and finds tinned fruit easy if he's feeling a bit full.He has also eaten steak pie, fish and chips, roast beef dinner etc. He decided to wait until the end of treatment before trying the alcohol. 

Dieticians will give you a sheet and are very helpful. Your team will ensure you have all the info you need. 

Hope you get your fitness test done soon

Keeping the faith

Milly

Thank you Milly - sounds as if your hubby is doing really well - fingers crossed I do as well. The operation and more chemo are a bit daunting - but I just have to focus on 2022

Andi xx