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 Mille, 

yay- almost there . Done, finito, appointments down from almost daily , to almost never (:

Scanning post op/ treatment is an interesting one. They don't routinely do that here post op. Husband having one because of the coughing, but we got the 'end verdict' at the last appt with oncologist. As she had all the scanning that was done previous and the pathology from op  and said ',no active disease'

They said they don't scan routinely post op as it is all on symptoms. When we asked why-: here goes...

If any of the little ******* have managed to survive and 'floating'around they are unlikely to be able to see them on even PET as they are too small to,show/glow and also to small to cause symptoms,We asked , as you do, well what if they were not showing up pre op, but have now grow!! Not that I'm paranoid at all, she said 99.9% of the time anything that will show on PET with give symptoms..... of course we think, well what about the 0.1% then (:

Of course , now that he is going for CT, the unpragmatic part of my brain is thinking about that 0.1%!!, but as I said yesterday, he has had this cough since op, so must be related to the new plumbing..... who knows, 

So in short, you will get your final 'picture' with the oncologist, then probably discharged ( hand clapping emoji)- but not discharged from here my friend (: we still need you x

Kepping the faith

Hilts

Well I've had a quiet day on sofa watching Downton Abbey.

Feel like I can relax a little more over the weekend as I know I won't hear anything now until Monday at the earliest.

Completely lost my voice thanks to this chest infection so having fun miming things over to the family. However very grateful that I got my first full night's sleep in a week so its the small things making me happy. 

8 weeks sounds like a long time to see the consultant again though even though I know most Post op follow ups are 6-8 weeks. Guess being in the club teaches you patience x

Hi Hilts and Millie 

So great to hear some patients getting to 'the end'.  Good luck with the scan Hilts. I am isolating this weekend then laparoscopy on Monday - biggie on 29th - terrified but you all give me hope and confidence - thank you xx

Andi xx

Hi Leo,

Hope you soon recover from the chest infection soon.  We've been listening to our team play footie and after all the shinanigins announced yesterday a 2-1 win is a big relief!
 

We have seen Consultant Surgeon and Consultant Oncologist since last op and before post op chemo and those results were good. The aim of post op chemo was a 'belt and braces' approach- fingers crossed and everything else lol.

Keeping the faith

Milly

Hi Hilts and all,

It is interesting the subtle differences between trusts. It may be because of the complications after the initial surgery that a CT scan will take place. Really hoping Kev's left lung has fully expanded. Apparently a small pleural effusion was still there after the VATS thoroscopy and decortication. However he is still using the spirometer and can easily hit 4000 now so fingers crossed it's a good sign. 

Overall he is doing well, next few days will be tough but like Sally said heading for the finish line and hopefully we can get some normality back.

As you say your husband has had his cough a long time so odds are it's to do with new plumbing but I understand your mind racing. Hope you get an appointment soon and they can sort it.

Andi - all the best for your laparoscopy. My husband decided to sleep on his back for a week or so post laparoscopy op. The wedge pillow I mentioned may help you too. Quick delivery if you decide to get one.

Keeping the faith

Milly 

Ah - didn't realise the pillow was fit after laparoscopy - will send fir one tonight - thank you xx

Hey y'all, 

Andi47- looking at this with a bit of a tongue-in-cheek job. you'll know nothing about the laparoscopy as you will be nicely asleep. While I'm on that tranche same goes for the actual op. My husband woke up after the main event and was like "oh, I'm done then". Myself and Millie as onlookers had weed free gardens after (: However, being human we ALL love to overthink it and no doubt google it and come up with all the absolute worst scenarios (: like coming out with no legs or arms LOL. I had my gallbladder out by laparoscopy and it was honestly probably then easiest thing I've ever had done - no pain whatsoever, all I wanted when I woke was FOOOOOD(:

Millie- of course my mind is racing- why change a habit of a lifetime (: LOL. Ye, of course Kev had a lot of 'extras' in his portfolio, so scanning is pragmatic, even if the effusion is still there, then by god to be able to get up to that level,on the resistor is darn amazing, so obviously lungs working pretty darn good .

Leo- that's more like it (: I tend to loose my voice through shouting/ nagging at my 'charges' (: You sound generally 'run down' and need the rest, regardless if you'll become a 'full' member of this club or not(:

Add to that the racing brain,racing kids, work , life in general , were you forced to 'home educate' during the closures ? All  are truly exhausting mentally and physically. Your brain has been absolutely full to busting for the last 18 months , now this. Trust me- I more than 'get it' .Probably why I'm feeling so mentally crap at the mo.

As ever, this chat lightens my mood, kinda off loading in 'privacy' LOl

Keeping the faith- most of the time

Hilts

Laparascopic surgery is the dream!! My little boy had laparascopic surgery to fix a PDA in his heart in May, and typically Google was my closest confidante and worst enemy in the run up to it! I was awful, and him only a couple of weeks before his 3rd birthday was so chipper after like nothing had ever happened. Just "Muffwin pwease" when he came round. Completely unphased :grin:

Hahaha when does rest ever happen? Deliberately avoiding my emails because I know I'll have loads off the consultants as they don't understand the concept of working Monday to Friday. Monday morning will be fun :P 

In reality I'm curled up on the sofa sucking pieces of a bar of Cadburys since I can't properly swallow it with a hot chocolate and dreaming of a long hot bath later. And then getting excited about starting university in 2 weeks. Determined not to let anything stop me. 

Thankfully grandparents picked up the home schooling of the eldest, I was still working albeit from home for half the time (really not easy phoning patients when you've got 2 screaming kids in the background), so the ups and downs of this year or so haven't been as bad. Little boy is starting school a year late though due to his learning difficulties so he won't go into reception until he turns 5. Thankfully grandma is a special needs early years practitioner so he gets a lot of one on one with her. She's even built him a Sensory room.

Awwww no feeling mentally **** is not the best place to be though I totally get it. Always good to have somewhere to vent in private though! X

Hi Andi,

My husband used pillows after laparoscopy and said an elevated bed would have made it easier and it will help after the 'biggee' too. The surgeons are very skilled and the nurses and staff are brilliant . We are so lucky to have the NHS and dedicated staff.

keeping the faith

Milly

Couldn't agree more Milly - NHS are just amazing. I know I'm getting the best treatment available. Have ordered pillow xx

Couldn't agree more Milly - NHS are just amazing. I know I'm getting the best treatment available. Have ordered pillow xx