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 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

Yaaay, Redski.

You're back too. X

There are a few more still  MIA- hopefully for good reasons.

Nice one- job done. My husband said same sort of things " best bit of grub he'd ever tasted" etc.A boost as well- it only gets better ( okay maybe not during the post op chemo !). But food progress is fairly quick  . mine is now 9 month post op and 6 months end of post chemo, he eats EVERYTHING (:

As for the 'new plumbing' husband will eventually learn ( I live in hope!) that he really needs to eat smaller portions grrrr. He has had this cough since op and after much wondering turns out basically that he eats to big potions all at once and there is no **** room for any more = coughing ,as irritating the airway as it is stuffed to the top ! HOWEVER, he is most pleased that beer seems to help swilling it down(: He needs to 'learn' to eat big in the morning and not in the evening ............. I give up grrrr.

Anyway, really shouldn't complain.

Well done to you and nice to see you back

Keep the faith

Hilts

PS - Millie- would it be a powder blue shade? , the online retailer beginning one whose name can also be found in South America???- if so, yes, it is brilliant- a great coming home pressie or in my case , his xmas gift (((::::

This is where I absolutely struggle too, Hilts - same as your guy ; and I need to learn ... eat smaller and slower. I still have the same appetite I had pre op and find it very hard looking at a plate of food and not want to vaporise the lot. So much so, after I got my surgical staples out last Thursday in London, I found myself in Nando's sat infront of a plate of a quarter chicken and chips - perhaps a bit too bold !

I ate half and doggy boxed the rest for later and was OK ... but I do find if I eat too much or too quickly I get a bout of the hiccups that are very annoying whilst my body is trying to process it all, like you say with your guy but his is a cough.

Just have to be patient, remind myself what we've been thru and take it slowly when eating and being sensible with portion sizing - which is where the kids COOK meals really come in handy as the portion sizing is easy and my wife refuses to let me eat more than half of one without 30+ mins in between sitting 1 & 2 ... and in fairness when she does that I don't have any issues (and I'm not sure she'll let me go rogue in LDN again solo, haha !)

Last tip (for just after op) I found useful is my surgeon got me onto chewable vitamins too, to help make sure levels are maintained ... and I know and appreciate opinion here is divided on them, but for context I like them because they taste like sweets and worst case - they can't do any harm so I'd rather errrr on the side of caution and take them !

www.boots.com/bassetts-multivitamins-raspberry-and-pomegranate-flavour-soft-and-chewies-adult-30-10204168

Hi Redski

thank you so much - loads of tips and ideas of food to get in. That was really kind of you - this is all so helpful when everything is so scary and unknown 

Kerp eating 

Andi xx

Hi Milly

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

Try not to worry or be scared Andi.

Like someone said to me, you won't know anything about it and will wake up, out the other side and can just focus on rest and recuperation.

I went down to theatre walking with and talking to the anesthetist and he put a cannula on my hand, said he'd give me 'a little bit of champagne on board' (his colloquialism for some initial anaesthetic) to relax me ... well that was all OK and was the last thing I remember talking to him as he said that ... next thing I knew, I woke up in CCU with my surgeon talking to me about how it'd all gone.

Youll be great, stay positive and keep walking forwards you're doing well.

Thank you - I will x

How is everyone getting on ?

Hope everyone is keeping on trucking forwards on their respective paths.

Hi Redski, thank you for asking.   Husband has just had his fourth and final round of post op chemo on Monday.   We were both incredibly relieved he managed to limp past the finishing line.   However he is pretty wiped out now with fatigue and chemo-ness.   Hopefully in a week or so he will start to pick up a bit, and then back to trying to eat proper food again.    I hope you are doing ok, and as you say, I also hope everyone is trucking along their paths.

Sally x

Hi y'all.

Hope everyone is good.

9 months today since the slice and dice was done (:

Y'all know mine has been coughing since birth, opps I meant op, must have been the 9 months LOL- and it is driving us both to distraction!! Well, rang our unit again to say arrgggg. She said ' oh I'll let the surgeon know" surgeon comes back- " well let's do CT Scan" To see what the trouble is !!!!! You can imagine what I'm thinking !! Last time we had those sort of words it went like " oh, we'll  just do an endoscopy to check everything is normal" . I am bricking it, I did ask them "are you looking for mets! , " not really they say, we are looking at the whole picture - arrrrgggg. Trigger or what.

On top of that we have now visited our local maggies. What an amazing outfit they are, defo be one of my charities for the future I think. We'll he went today and I go Monday. They have offered loads of 'psychological' stuff, but we got a fascinating article written by one ( can' remember name and to lazy to get of my butt and look). Harvey maybe?? Describing EXACTLY what is going on in our heads at the mo. So uncanny, I wonder if he has been in my head! Very much about the auto pilot, then wham, the massiveness ( queens English?) of the whole thing starts to hit home. At least I take heart from knowing for the first time in my life I am completely normal!! Still don't feel good though ):

Sally- yay- all done , finito. Yep, the hero in him will start creeping back little by little over the next few days, then weeks and before you know it, some type of normality- yay

Anyways

Onwards and keeping the faith

Hilts

Hi y'all.

Hope everyone is good.

9 months today since the slice and dice was done (:

Y'all know mine has been coughing since birth, opps I meant op, must have been the 9 months LOL- and it is driving us both to distraction!! Well, rang our unit again to say arrgggg. She said ' oh I'll let the surgeon know" surgeon comes back- " well let's do CT Scan" To see what the trouble is !!!!! You can imagine what I'm thinking !! Last time we had those sort of words it went like " oh, we'll  just do an endoscopy to check everything is normal" . I am bricking it, I did ask them "are you looking for mets! , " not really they say, we are looking at the whole picture - arrrrgggg. Trigger or what.

On top of that we have now visited our local maggies. What an amazing outfit they are, defo be one of my charities for the future I think. We'll he went today and I go Monday. They have offered loads of 'psychological' stuff, but we got a fascinating article written by one ( can' remember name and to lazy to get of my butt and look). Harvey maybe?? Describing EXACTLY what is going on in our heads at the mo. So uncanny, I wonder if he has been in my head! Very much about the auto pilot, then wham, the massiveness ( queens English?) of the whole thing starts to hit home. At least I take heart from knowing for the first time in my life I am completely normal!! Still don't feel good though ):

Sally- yay- all done , finito. Yep, the hero in him will start creeping back little by little over the next few days, then weeks and before you know it, some type of normality- yay

Anyways

Onwards and keeping the faith

Hilts

Hi Hilts,   I hope the CT scan is ok, I can imagine how you are feeling, when is it?   I think my husband will be having a scan as well, different people say different things, so not sure, but I think it will be before the Oncologist call next month if he does have a scan.   It would be good wouldn't it if they could just see what might be causing the cough, it is a very difficult thing to live with, especially with people so wary of COVID coughing carriers.   Let alone the irritation of it.   And it is irritating for all parties.  We actually went to see a play a week ago, how exciting.   For some reason I started getting a tickle in my throat and was frantically trying to suppress a choking fit in the very quiet audience.  It was horrible and could have ruined our first night out for years!   It's not even me who is ill so what's that all about.

interesting you dropped into Maggies.   At his last chemo session I walked by the Maggie's centre near the hospital, I stood a while, but couldn't go in, I felt I would just start crying and not be able to say anything.   Or what even to say.   So I just ended up walking around the grounds.   I hope your session there helps you and brings you some comfort.

keeping the faith,

sallyX

Hi all,

My husband had his last FLOT today - hurray! Quickest one too finished at 14:10 although still has 5FU to go through til tomorrow. Sally - my husband asked about a CT scan and was advised it should be in 6 weeks and then 8 weeks until he seeing Oncology consultant. He has appointment with the surgeon on 6th October.  I hope your husband is beginning to feel a little better day by day. 
 

Hilts - yes I understand you must feel anxious and I agree with what Sally said about it being irritating. It seems a simple thing but when it's constant it must be difficult. Hopefully the scan will enable them to resolve the problem. Re the wedge for the bed lol - yes longest river in the world I believe by volume lol Pleased that Maggies were helpful and the article is by Dr Peter Harvey and the Clinicol Physcologist gave it Kev - very helpful and interesting . I definitely appreciate an explanation rather than a professional just listening although that in itself can be helpful too. 

I did think of something that might be help - Pomegranate juice or pomegranates are good for the platelet count. 

I hope everyone is going along OK on this difficult path. I appreciate everyone's situation is unique but I really do wish you all healing thoughts for body and mind.

keeping the faith

Milly

Thanx Sally, 

Ye,don't know yet, they'll send us an appointment, but the pragmatic side of my brain tells me that as he was coughing immediately post op, even during all the chemo , apart from when on dex- so looking like 'irritation' , he also finds it impossible to eat smaller meals and packs what is left of his stomach to the top grrr. Also if he was coughing straight from the op ,but not before then it has to be something to do with the op......., but my non pragmatic part tells me arrrg, it is obviously dodgy (:

As for coughing generally, drives me MAAAAD, 3am, the world is peaceful quiet, and then ...... arrggg.

i really feel your pain with your cough LOL, The more you try and stop it , the more it happens and now of course everyone glares, because of course every cough is Covid!
i have always been a Covid pragmatist. It is a viral infectious disease like any other. When I looked at what my what would be my 100  yr old (died 95- not Covid, had the temerity to be something else LOL)Nana lived through, she would find it incredible the reaction to the whole thing. When she was young, viruses like diphtheria, polio, smallpox,  measles etc etc were  ever present, before even starting on the bacterial stuff like TB, Scarlett fever etc, add to that the blitz, poverty, being one of 22 live births with only 8 living to adulthood, this would be for her a case of same old same old. Get on with it. Like my 80:yr old Dad said right at the start " if I can't live, what is the point of being here" , meaning he saw not point in locking himself up at his age.  Me- well I just wash my hands and crack on, like cancer , what else can we do.

As for being worried about crying the whole time in Maggies. That is what it is for and if it needs to flow, it needs to flow, let it go. It will out at some point- so get in there, you were very tempted, so clearly on your mind, and , I'll say it again- let it flow (:

And Millie yaaay- Kev is now done , finito, excellent news (hand clapping emojis ) I bet like us you cannot belive it! It is over. My god look at what we have all been through. Little by little, he too will get back to his old self- but as we still do ,cannot belive it was real. I have to,say though, now the emotional stuff is kicking in, but although I don't like it, I do feel it will be good for our souls, to not forget about it (how can you), but process it in positive way, file it if you like in the old hard drive (brain) and feel reasonably okay with it being there. The team have said the first year post treatment is the toughest in terms of emotional chickens coming in to roost, but I feel pretty well 'supported' and I am not scared about letting myself feel what I feel.

Now I'm feeling 'thirsty', now he is recovered, HE can get the kettle on.....

platers

Keeping the faith y'all

Hilts

I had a post op, benchmarking CT Scan today at 11:30am and saw my surgeon at 1:30pm to go through it and my histology results from the lab on what they removed in the op.

Thankful that the CT scan was clean and normal and histology back, all 72 lymph nodes he took came clean back too. He told me to go and celebrate with another Nandos, haha !

So, I'm now waiting to start post op chemo on 6th October which means all being well I should be done by 18th Nov.

Keeping walking forward, head down getting it done.

Hoping everyone else on their respective paths are keeping on, keeping on too and moving forwards.

Oh that's fantastic news!!! Definitely celebrate tonight x

Nice one redski...good news 

Hi Redski

That's fantastic news - enjoy your celebration. I have my 'op' next Wednesday - very scared but nearly there. Good luck with the chemo - all fixed by Christmas 

Andi x

Thank you all, really appreciate it and this thread has been a huge part of the journey and getting through it with all of you and your lovely positivity throughout.

Lee, good to hear from you and I hope your Dad is doing OK too.

Andi, please don't worry ... honestly, you'll be talking away to the anesthetist and before you know it, the next thing you're aware of is waking up in the Critical Care Unit the other side of it and be none the wiser about it.

You can do it !!

Thank you Redski - worried about my fitness level as had a broken humerus which stopped any exercise - so not very fit but surgeon/anaesthetist have decided to go ahead - watch this space

Andi x

Hi Redski

absolutey thrilled for you, well done you and your team awesome news

Tabnabs

x