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 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

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

Hi AndI,

I was very overwhelmed by it all at times and it is daunting. However lots of people have come through it and recently which helps. What happened to my husband was very unusual but they sorted him out. 

He has one more round of chemo next Friday 17th fingers crossed and then recovery and hopefully some normality after nearly a year. Diagnosed end of last October. 
Take heart - you will get there. If you can it's good to gain some weight and walk too. If you're eligible for any vaccines it might be worth asking your doc if you can have them before your op. 
 

keeping the faith

Milly

Hi Milly

Yes I am trying to walk to get a bit stronger - was totally inactive due to chemo but had a broken humerus bone just prior - and spent 6 weeks (and nights) just sitting on my sofa - so very unfit!! Really trying now - having flu jab tomorrow. 
 

sounds as if your husband has had an exceptionally bad time - so glad his treatment is nearly over 

Andi x

Hi Andi

Yes he has been through an awful lot, even more than we anticipated but NHS and surgeon have been excellent and the actual operation has been successful. 

Oh dear re breaking your humerus bone! Glad your able to walk definitely worth the effort. Makes you feel better too getting out in the fresh air. We are all behind you Andi and it sounds like you have a loving family and friends supporting you too. 
keeping the faith (the mantra from Hilts which I've pinched)

Milly

Hi all again lol,

Just thought I'd share that Kev has bought a wedge pillow from a well known online supplier   which seems a really good option instead of pillows. He has also bought an inflatable one in prep for trips on a plane hopefully! 
Thought I'd mention it especially for AndI and Redski. If you Google wedge pillows you will find quite a few. 
 

Andi I suppose this is obvious but I bought some small tubs to put a variety of food in small portions in the freezer  but because Kev had a longer stay in hospital he was further down the line regarding eating. Fish is also a good opton like salmon which is easy to cook either pan fried, in the oven or microwave.

Hope this is helpful

Keeping the faith

Milly

Hi Milly

That's a great idea as my freezer containers are quite large - thank you xx