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

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?!

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

(:

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