Hi Sally R,

Welcome I'm Mandy aka Millie58. We are literally at the same point! My husband was diagnosed at the end of October 2020 but due to staging, Covid & Christmas plus a delay due to the dpd test mix up didn't start chemo until end Jan - so a long wait. Unfortunately after a successful op on 4th May complications happened a week later I won't go into details (it's on RayB) but he had 5 weeks in hospital and then another op on 1st July to enable his left lung to expand. Consequently  his second FLOT was delayed and he too has just had second cycle of post op FLOT. So far so good but he did suffer the runs and nausea last cycle for a few days. 
 

I would definitely recommend joining the other link RayB as lots of past, current and recently operated 'victims' as Hilts calls them! Lots of positive outcomes. My husband has done extremely well considering he's had 3 major life saving  ops in 8 weeks! 

It can be a very long and lonely journey as it's not a common op although clearly nationally there are a lot done. It's hard to explain how hard the diagnosis and diagnostic tests are to deal with let alone the enormity of the operation and problems eating before and after the op. Everyone is unique too. Just a thought - have you had histology results from op yet? 

We are all here for each other so ask any questions and we all help each other but recognise we aren't medics just 'fellow travellers'.

Keeping the faith (Hilt's mantra)

Milly

Hi Millie, thank you so much for replying.   I've read your posts about the post op complications and further ops your husband went through.   How awful.   Just when you think you can't bear anything else happening, life goes ahead anyway and chucks it at you.   You are right about it being quite a uncommon op.   Quite confusing as well explaining to friends etc about different stages.   Like coming through the oesophagectomy successfully isn't the final step, although such a huge one.   
The histology was difficult to understand, or may be we didn't want to understand it...    The initial FLOT rounds shrunk the "large, bulky, poorly-defined tumour" quite a lot,  so that an oesophagectomy could go ahead.   So we imagined, and also the oncologist said, it looks like the tumour is sensitive to chemo - a good thing!
However, when the results came back from the operation, the pathological response to chemo was only very slight.   A partial response.   The surgeon said we might want to think about whether having the mop up FLOT was worth going through.   We did discuss it with the oncologist and she seemed to think it could be worth it.   However the surgeon got good margins, so that is good.  And lymph nodes were clear.

How about your husband's histology results were they OK?
Will be very interested to hear about how the second lot of chemo goes for you.  My husband is really really tired at the moment and today (day5) can hardly do anything, even speak (although seems to find the energy to be annoyed at me ).

Thank you so much again for answering, I was feeling pretty low.

Take care,

and keeping the faith

Hi Sally,

It can be so overwhelming to handle all the different emotions as a 'onlooker'. From what you've said the operation sounds successful the same as my husband clear margins and no lymph nodes affected. My husband was T3 N1 M0 and after op it was downgraded to T2 N0 M0. Another good sign is that the surgeon suggested your husband may not want to have the post op chemo. My husband's is mop up chemo (belt and braces) and after all he's been through it was a difficult decision but oncologist and surgeon said it gave a better chance of a cure and results were favourable. 

He decided to go for it and I'm glad he has done. He went today so bottle is removed tomorrow. Last cycle Monday, Tuesday and Wednesday were tough days 4,5 and 6. It is pretty nuclear and not long after a huge op too. Kev is just in the 12 weeks window when they prefer to do it. We are just counting down and have took the chance and booked a week in the Lake District in October so fingers crossed. 

It's natural to feel low at times as it's such a difficult cancer and there are lots of sites with outdated information. My husband has always maintained that he only needs to know the facts not statistics, predictions etc. Walking the line is what I'm trying to do, not looking too far back or forward - not always easy especially if you are organised and like planning! I knew I would need support so requested help on the holistic assessment and we have seen a lovely lady who helps cancer patients and their family. This is only recent but we have found the Upper GI team brilliant and the cancer nurses too. I have also rang MacMillian who were helpful especially the nurses.

I think my 'Takeaway' is your husband has been fortunate to have the op - not what he/you wanted but needed. He has come through that and this is the last leg. In a few weeks hopefully we can both look forward to better days - it may not be easy but definitely better than it could have been ... 

Keeping the faith for everyone 

Milly

Ps re the eating everyone says it takes time to adjust to the 'new plumbing' as my husband calls it. He has a smaller plate but it's pretty full now. I found getting him to decide what/how much  he wants on made it easier and I don't sit opposite him - I sit next to him. 

Hi Sally

Just for background,  I'm 5 1/2 months post op and 2 months after the final cycle of the 2nd round of flot.

The 2nd round definitely got me harder than the first time as the body is still in post surgery recovery and is having to deal with assaults from all sides. 

My wife called it GOG - grumpy old git mode - and kicked in a few days after each cycle and lasted a few days too. She now tells me off if I enter GOG mode again as I have no excuses left. 

I did improve though before the next cycle and bloods are taken to make sure the body itself is coping.  

Do speak with your oncologist though if it becomes too much - they obviously go for the maximum dose, but can tweek the dosage. 

The other issue on food - you should have access to an upper GI team and a nutritionist who will probably go through your daily food routine and advise.  My initial problems appeared to relate to sugars and high sugar content foods,  so basically cut out the sweet stuff for a few weeks and gradually reintroduced back into the diet.  I still get late dumping about once every couple of weeks,  but nowhere near as frequent. 

Milly! Aka Mandy! Last cycle! I remember mine and having the picc line removed!  Freedom! Just the injections to go,  a few more days of GOG and then party time.

Sally - feel free to join us in Ray's thread :-) and ask questions!  As MillyMandy says- each person has their own journey,  with their own unique problems, but the key message is that you are not alone and we are more than happy to share as much gruesome information as you can handle.

Cheers

Bfg

Hi bfg!   Thank you for answering.   Especially interested about GOG mode.   My other half definitely turns into a Mr Hyde character on about day 3 after day 1 of chemo!   He does have a lot of help offered from all directions, it is great.   The dietician calls him regularly.   This dumping thing sounds difficult to advise on though.   The only thing really is eat smaller portions, regularly, try softer food.   Hard to change habits of a lifetime though.  (He is 59.)  Funnily enough he seems ok with drinking alchohol, very strange.   And the famous crisps.   Neither very healthy, oh well.   The biggest baddest item of food seems to be bread, causes problems every time.  He still has a feeding tube and uses that now and again to get nutrition in.    Well I think I will go over to the RayB site where you and Millie post, to keep your useful information and kindness in the same place.

 I would like to say well done to you (and your wife) for getting so far along on this tough tough journey.   It definitely takes guts....  (oh dear it really does).   And also for posting your experiences, 

thank you

Sally

Hi Bfg,

Great info as usual. Not heard from RayB lately I do hope he is doing OK.

Just to clarify my husband has had second cycle so fingers crossed 2 more to go then Freedom. What with Covid it's certainly been a tough time! Did you see my cryptic clue? 

Just a quick question were you still on painkillers during second round of chemo and did your op sites hurt more. Sally maybe you know whether this applies to your husband too? Obviously my husband has more battle wounds especially several drain sites as well as additional op wounds.

Keeping the faith 

Milly

Hi Milly

I'm not usually that good with cryptic,  being from brum - but I did use to go to Burton on the water,  which is near a place where "If you wanna smooch and be happy as a pooch" then this is the place to go to. 

I stopped the morphine based drugs about 2 weeks from coming home and the paracetamol 3 weeks after that. I didn't get any additional pain during the 2nd round of flot.

Sally - I was 59 3 days ago!  :-) In the early days, I ate more toast than fresh bread and my surgeon advised not to tell the dietician as she would "flip". We don't eat supermarket bread preferring a local bakery that long ferments the dough,  which reduces the GI. A lot of processed bread also has surprising amounts of sugar added to it. My feeding tube was taken out following an infection in hospital and fortunately I've not had the eating problems others experience.  It's still little and often, large meals are a real nono. I still drink alcohol too, but avoid any liquids for about 30 minutes after eating and again,  little and often. 

Bfg

Hi Millie,   No husband not needing any painkillers for wound sites, though as you say not as many op wounds as yours.    I imagine many nerves would have been put out of kilter with the added operations and these take a while to knit together again and while this is going on it causes pain?  Then add chemo to the mix...

Last week though he had the worst pain he has ever had in his chest radiating/pulsing down to his hip bones.   He found it hard to explain.  He couldn't lie down at all during the night or get comfortable.   Quite frightening as he isn't one to complain of pain usually.   He stopped injecting the filgrastim as thought that was the cause.   The pain gradually eased the next day.   After speaking to the nurse on his check up call they did an ECG before starting his chemo this time.   It showed up normal.   He has been given more filgrastim to inject as per usual.   The radiating pain began on his fourth injection, so maybe he will do as many injections as he can, even if not the full week's worth.

Thinking of you

Sally

Hi,

Thanks for your replies, Bfg yes you are correct with your song lyrics! Good point about the bread too - we have a mix of bakery and supermarket but yes more sugar in supermarket. I can't go shopping at mo so more reliant on supermarket for everything! Be so good to get out again. 
 

My husband was tapering down the tramadol before his 3rd op in July but still needs pain killers. Nerve damage is right Sally. He has had so many drains put in - I think more than 10. He was reducing again but chemo seems to have made it worse. Re injections my husband had back ache and cramps pre op cycle with them. He does tend to get on with it so I know when he says he's in pain he is. All the medics say how well he's done after all he's been through. It was the right gastric blood vessel that was caught by the drain leading to him becoming critically ill. Very unusual and never happened before - so unlucky. Anyway onwards we go ....

keeping the faith

Mandy aka Milly